Approaches to understanding grief
Much of the research and current thinking around grief work has evolved from the work of John Bowlby (1980), who identified the role that attachment plays when people experience loss. Usually, (but not always) the nature of the relationship between the deceased and the survivor dictates the impact of grief A model of grief offers a framework from within which practitioners can facilitate grief. Such models also affirm the grief process and the diverse ways that individuals might react following the death of a loved one. Over the years there have been a range of grief models, some more helpful and effective than others. The models and approaches presented here are used to offer a flavour of how such understanding can facilitate the support of bereaved people who have a learning disability. Bereaved people may respond to death in numerous, multiple ways, which include emotional, physical, behavioural and psychological effects (See Table 1). This table is offered to give an overview of the various common responses to death.

Table 1. Grief responses (Worden, 1991, p.21-36)

Traditional theories of grief involve the idea of working through and 'resolving grief, of letting go of the deceased before being able to move on with life. Various stages of grief are described e.g. shock and numbness, yearning and searching, disorganisation and despair and re-organisation (Parkes, 1996). Alternatively, grief is seen as conforming to a series of tasks: to accept the reality of the loss, to work through the pain of grief, to adjust to an environment in which the deceased is missing and to emotionally relocate the deceased and move on with life (Worden, 1991). However, more recent theories suggest that the resolution of grief involves continuing bonds, where the survivors maintain a relationship with the deceased and that these continuing bonds can be a healthy part of the survivor's ongoing life. Klass et al (1996) in their book on the subject provide some case examples such as: -

• A 12 year old who still talks to her dead father when she has difficulties at school. "He'd understand if I screwed up in school. Mom would get real mad. So now when I get a bad grade I 'talk' to him about it."

• A widow who still talks to her husband. "So it's like I'm talking to him the whole time I'm getting myself ready to go to work. It's like this constant conversation he and I have .... And it's like even though physically he's not here, that mentally I have this continual conversation going on with him..."

• A father who talks to his dead 17 year old daughter while running. "I often reported silently to her about what I'd been doing lately, about what I thought of the weather, how my conditioning was going, what her younger brothers were up to. Frequently I sensed she was nearby, cruising at my elbow."

Examples of people with learning disability include:
• A 33 year old woman who often talks to her dead mother when she makes mistakes in the kitchen. She laughs and looks upward, reflecting on how her mother would laugh at her mishaps.

• A 22 year old man, who loved to go back to visit the home where he used to happily live with his parents. He liked to recount stories about his life there and the good and bad times that he shared with his family.

• A 31 year old man, who lived in a community home, who describes how his best friend (who died twelve months previously) visits him at night whilst he is alone. He tells her everything that he has done during the day, and she smiles but never talks back to him. He finds her visits comforting.

Life story work, memory books and photographs are all tangible ways of helping people with a learning disability to maintain memories and preserve important relationships with their loved ones in accessible and concrete ways (see page 12-14). A sixty-year old lady lost her mother 18 months ago One day, carers might be surprised to find her distressed, not very well presented and clutching a photo of her mother to her chest. From this snapshot view, one might assume that she was failing to come to terms with her mother's death. However, carers may find that the next day she would be well dressed, chatty and waiting eagerly to attend the Day Centre. The photograph may be back on the windowsill with those of her friends and family People may feel overwhelmed by their grief at times, yet at other times emerge bright, cheerful and appearing to be coping well. This is what Stroebe & Schut (1999) describe as the dual process model of grief, where bereaved people oscillate between the mixed feelings of emotions and coping.

Machin (1998) describes a range of response to loss in which people may show bias towards certain dimensions of loss such as feeling overwhelmed or feeling that they need to be in control. A bias towards a balanced dimension suggests that the individual is able to address both the emotional/cognitive elements and the need to be in control of and get on with his/her life. In this sense the balanced dimension is similar to the oscillation process in the dual process model. Doka (1989- 2002) coined the term disenfranchised grief to describe grief that is not socially accepted and so may be more difficult to deal with because of lack of social support or the benefits of rituals. His approach is helpful because it recognises the importance of the social context in which death occurs The context may have a profound impact on how the death is accommodated, which other models often fail to include. Doka recognised three key elements to disenfranchised grief:

1. The griever can be disenfranchised because of the assumptions that other people make. People with learning disabilities may be assumed not to grieve because 'they don't understand.'
Consequently, people with learning disabilities may not be told of the death of their loved ones, so do not attend funerals and as such are completely excluded from the bereavement process and any associated rituals.

2. The relationship may be disenfranchised if the relationship is not recognised. It may happen that (for example) a father does not visit his son very often. If the father then dies, it would still be important for the son to know. He is still his father. Everyone has a right to know when important people die so that they can acknowledge the death and explore it's consequences.

3. The loss itself can be disenfranchised. For example, many losses that are not death related (loss of home, loss of friendships etc) can be disenfranchised because of the tendency to associate loss mainly with death. Over the years, people with a learning disability may have been exposed to enormous, often multiple losses, that have largely been ignored and subsequently neglected. Carers may have come and gone; friends may have been relocated; individuals may have moved to community-based homes. All changes (however positive in the long term) involve loss of some kind. Some carers might think that they are protecting people with learning disabilities from the sadness associated with loss if they do not inform them, and involve them, in death. Eventually the person will discover the loss, and not being informed or involved might cause numerous additional problems in how they then deal with their grief, months or even years after the death.

Joan was forty-four, and lived at home with her father. Following his sudden death due to a heart attack, Joan had to quickly move into residential care. Her family did not want her to be upset any more than was necessary, and as a result Joan never went to her father's funeral. Joan had difficulty accepting that her father was never coming back, and indeed could not understand where he had gone. Many months following the death, Joan was referred to a bereavement counsellor, who helped Joan to explore her feelings around the death and to help her to understand what had happened at the funeral. This involved taking Joan to visit the church where the service was held and to the graveside where her father was buried. As a result Joan was grieving separately from the rest of the family, and in isolation.

Such approaches tell us much about the uniqueness of grief and the range of potential responses involved. People need to have every opportunity to participate in the death and the associated rituals, to affirm the death and to enable them to say their goodbyes in a meaningful way. If individuals are excluded from grief, then the grief process may be delayed and individuals may find it difficult to accept the death and subsequently acknowledge and explore their feelings of loss. People with learning disabilities do experience loss and do grieve, but they require the opportunity to be involved in the death and bereavement experience. This may prove challenging for many different reasons, as illustrated below. Such experiences can also help them to develop appropriate coping mechanisms for any future losses.

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