Grief and Bereavement in People With Intellectual Disabilities

Philip C. Dodd; Suzanne Guerin


Curr Opin Psychiatry. 2009;22(5):442-446. 

In This Article

Grief and Bereavement in Intellectual Disabilities

Having considered the relevant research with the general population, a number of recent articles have considered the implications of grief and bereavement for PWID.

Ability to Grieve

It was long considered impossible for PWID to experience grief. A possible result of this is the fact that little empirical research work has been done to specifically look at the normal or complicated grief response in PWID. Much of the work describing PWID and their reaction to bereavement has been based on descriptive case reports.[12]

Research has previously been carried out looking at the individual's understanding of the concept of death, to assess whether an individual has a cognitive understanding of grief and bereavement. Concept of death is made up of finality (death is final), nonfunctionality (functioning ends at the time of death), causality (death occurs for many reasons), and universality (death is a certainty).[13] Research suggests that PWID have limited concept of death, and that this is related to the level of cognitive functioning.[14]

A recent study completed by MacHale et al. [15•] considers service users' understanding of death, and 34 service users with mild or moderate intellectual disability were interviewed. Their concept of death was assessed using case vignettes describing death-related incidents. One in four participants had a fully developed concept of death; just over two-thirds showed understanding of finality; a similar number understood nonfunctionality; and understanding of universality was evident in two-thirds of participants. Almost all participants described various causes of death. In addition, corresponding care workers were interviewed, and their assessment of the concept of death of the relevant individuals was explored. Staff overestimated the service users' understanding of the components of the concept of death. The authors make the point that, in developing bereavement support plans, there should not be an overreliance on staff reports of service users' capabilities; the use of independent measures of concepts of death and related behaviours should also be used.

Pathological or Complicated Grief

When describing atypical grief, prolonged grief disorder is now the most widely used term within the general population. However, it has not been used to date in any research with PWID. The terms pathological or complicated grief are more common in this body of literature. Brickell and Munir[16••] have recently reviewed complicated or pathological grief within this group. They make the point that little consideration has been given to the distinction between typical and pathological grief in PWID. The authors describe some of the challenges that exist in trying to examine pathological grief in this population, including the fact that many of the screening questionnaires looking at prolonged grief disorder in the general population assess psychological responses that are often difficult to establish in PWID. The authors go on to hypothesize that PWID are at a greater risk of developing pathological grief responses for three main reasons:

  1. Secondary losses, such as loss of the family home/move to live with paid carers, often occur for the PWID following the death of a parent. These losses serve to add to the difficulties for the PWID in achieving any restoration of coping.

  2. PWID frequently have difficulties in communicating effectively about the loss.

  3. PWID often have difficulty in achieving an understanding of the meaning of the loss, an important coping strategy used by many individuals in the general population.

Given the need to identify PWID who are experiencing difficulties following a bereavement, Dodd et al. [17••] have looked at complicated (pathological) grief symptoms in PWID. They adapted a previously used inventory of complicated grief symptoms for use with children and carried out a carer-based comparison study to look at both complicated grief symptoms and bereavement-related experiences. The study sample consisted of PWID who had experienced the death of a parent within the previous 2 years (the bereaved group) and a matched group who had not been bereaved during the same period (the comparison group). The two groups were matched for demographic characteristics including level of disability, sex, and approximate age (within 5 years). Overall, 76 carers of PWID took part in the study. Half of the sample had experienced a parental bereavement within the previous 2 years whereas the other half had not. The study found that bereaved individuals experience complicated grief symptoms following the death of a parent, with one-third of the bereaved group experiencing 10 or more clinically apparent symptoms. Separation distress symptoms (e.g. yearning, distrust of others) occurred more frequently than traumatic grief-type symptoms (e.g. disbelief, bitterness over the loss). The authors also found evidence of a correlation between increased bereavement ritual involvement and the development of symptoms. The authors speculate that the individuals in the study may have taken part in bereavement rituals without appropriate preparation or previous experience of such rituals (e.g. with bereaved friends or more distant family). Therefore, this lack of ritual context may contribute to the development of symptoms.

Professional Carers and Staff

Given the critical role of professional carers and staff in supporting PWID generally, a number of studies have considered the views, knowledge, and needs of this group in relation to the issue of bereavement.

Staff members have an important role to play in preparing PWID to respond to the challenges of bereavement and supporting them following a loss.[18] However, it is argued that professional carers are not adequately prepared to identify a possible negative reaction to bereavement[19] or to provide effective supports to PWID at the time of bereavement.[20,21] As considered above, the recent article by MacHale et al. [15•] also explored staff members' confidence in assessing support needs among PWID following a bereavement. In this study, 42 staff members rated the severity of the behavioural reaction to the bereavement and the level of support required by a target individual with intellectual disability. This study found that few staff members expected individuals to show behavioural difficulties and that staff expected individuals to require moderate levels of support in general following the bereavement. Finally, staff participants' confidence in identifying symptoms was high; however, staff confidence in their ability to support individuals following bereavement was limited. This study suggests that staff working with PWID can identify individuals at risk of difficulties following bereavement but that they have concerns around their ability to appropriately support these individuals.

A further complication for staff working in intellectual disability settings comes from the nature of the relationships that form between staff and service users, particularly when this relationship has been built up over a period of time. Early work by Murray et al.[20] stressed the demands faced by staff members supporting PWID following bereavement from both a personal and a professional perspective. Interestingly, a study by Gilrane-McGarry and Taggart[22] reported findings of interviews with 11 PWID who had experienced either a parental or a sibling bereavement within the previous 10 years. This article highlighted PWID's awareness of the challenge staff face in dealing with and supporting individuals who have been bereaved. Other relevant findings in this article include that PWID view practical interventions such as ritual involvement as being beneficial, whereas there was a general sense that both formal and informal direct support was not available.

Recognizing the demands bereavement can have for staff, Dodd et al.[21] highlighted the need for specific training in this area, whereas a qualitative study of staff working with PWID in palliative care settings[23] highlighted training needs in relation to death, dying, and bereavement. Considering the possible impact of training on staff, a recent empirical study by Reynolds et al. [24•] looked at a sample of 33 staff, half of whom underwent training in bereavement support. Levels of self-reported confidence were assessed before and after training for the group, whereas those who were on a waiting list for training completed measures over the same period. The study found that though levels of knowledge regarding bereavement issues for PWID were high, ratings of confidence in supporting individuals were low. However, significant increases in confidence were identified among the staff who received training, which contrasted with no evidence of change among the comparison group. Although this is a small-scale study and clearly further replication of this type of study is required, it highlights the potential positive impact of specific training in this area.


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