18 February 2016

When someone with an intellectual disability loses a parent through death, this is not just the loss of someone they loved, but also the loss of someone who is likely to be the most familiar with their needs, their likes and dislikes, and with whom they shared a trusting relationship.

Victoria A Mason (UK) and Sandra F Dowling (UK)

"Grief is the price we pay for love" (Parkes, 1986).

The social context of bereavement

Losing someone we love through death is something that most of us will experience at some point in our lives. Whilst there are shared emotional responses to bereavement, the rituals of mourning and grief are shaped by our social institutions and the norms of our social groupings.  That is, who we are and how we live guides the way we grieve. We are all members of various cultural, social, religious and economic groupings, different ages and genders. Mourning rituals emerge within these groupings in many guises as individual members interpret the dynamic, fluid structures influenced by changing outlooks and the infusion of ideas from the prevailing social world (Parkes et al., 1997; Doka and Davidson, 1998).

The experience of bereavement

Just as those with intellectual disabilities form close bonds and loving relationships with people in their lives, so too do they experience an emotional response through grief when loved ones die. However, it is still common for people with intellectual disabilities not to be told when a loved on has died, to be left out of the rituals of grief and bereavement, and to be excluded from the opportunity to say their final goodbyes.  Indeed, people with intellectual disabilities are often left wondering what has happened to their deceased relative or friend, with no explanation as to where they have gone or why they are missing from their lives. Doka (1989) coined the term ‘disenfranchised grief’ which well describes the position into which people with intellectual disabilities are commonly placed following a loss through death, as the emotional impact that bereavement has upon their lives too often goes unrecognised (Arthur, 2003).

Unacknowledged grief

Read and Elliot (2007) note that the socially marginalised position which people with intellectual disabilities frequently occupy underpins their experience of disenfranchisement at times of loss through death. A situation which they argue is also faced by many other marginalised groups as their ability to publicly mourn is widely unsupported (Doka 1989). For people with intellectual disabilities, this manifests in society’s failure to acknowledge their emotional lives (Arthur, 2003) and a disbelief in their ability to emotionally grasp the complexity and finality of death (Conboy-Hill, 1992).

Oswin (1991) terms this the ‘double taboo’ of death and disability in which expressions of grief are labelled as ‘challenging behaviour’ and are assigned to someone’s intellectual disability, rather than their emotional state. This is akin to ‘diagnostic overshadowing’ in the healthcare field whereby ‘symptoms of physical ill health are mistakenly attributed to either a mental health/behavioural problem or as being inherent in the person's learning disabilities’ (Emerson and Baines, 2010).

The pioneering work of Maureen Oswin (1981, 1985, 1991) and Hollins et al (1985,1989) set out to challenge the views held by society in this area.  Their work demonstrated that people with intellectual disabilities respond to bereavement and loss in essentially the same way as anyone else. Yet, despite this now being widely accepted in many professional circles, the legacy of previously held assumptions still resonate in service settings as well as in wider society. Cases of ‘diagnostic overshadowing’ are still widely cited in the research literature (Gentile and Hubner, 2005; Dowling et al, 2006) as are cases of complicated grief (e.g. Hollins and Esterhuyzen, 1997; Bonell-Pascual et al, 1999; Summers and Witts, 2003; Dodd et al, 2008).

Emotional protection

Paradoxically, it is also commonly suggested that people with intellectual disabilities should be protected from the reality of death due to immense amount of sorrow it would provoke. As a result, many people are still not told about the death of a loved one or are prevented from attending their funeral or other rituals, such as viewing the body, visiting the grave or scattering ashes (Forrester-Jones, 2013).

This is often portrayed as a 'benevolent exclusion', as protection from the harsh reality of the situation is often the stated motivation behind such decisions. However, it is a situation which further highlights the complex web of assumptions held in society about people with intellectual disabilities and their ability to grieve. People making decisions on behalf of those with intellectual disabilities often question the individual’s ability to understand death or recognise loss, but at the same time, predict that the person would be overwhelmed by emotions if informed.

Mixed in with these assumptions are fears of the consequences that may occur as a result of informing someone of a loved one’s death. Family members may be anxious as to their own ability to cope with the feelings of their intellectually disabled relative, at a time when they are absorbed by their own grief (Forrester-Jones, 2013; Handley and Hutchinson, 2013).

The loss of a parent

When a person with intellectual disabilities loses a parent through death, this is not only the loss of someone who is loved, but is also the loss of the person most likely to be familiar with their needs, their likes and dislikes, and with whom they had a trusting relationship. It is also the loss of a person with whom it is likely they could best communicate, who cherished them, whose attention was centred on them, and who provided comfort and companionship. Furthermore, it is the loss of a person who likely recognised and valued their role within the family, of the life that had been led until now, and of other people who had been part of that life (Division of Mental Health, 1998).

If the individual was living with a sole surviving parent, when their parent dies, they may have to leave the family home shortly after the death, perhaps to temporary accommodation (Oswin, 1991). Additional major challenges may result, such as adjustment to a succession of new carers and idiosyncratic procedures, meeting new companions with intellectual disabilities, all with their own competing demands. Unexplained and unexpected changes like this can lead to a loss of individuality, whilst the negotiation of unfamiliar and non-individualised environments can have the effect of making their disability appear worse. (Division of Mental Health, 1998). Staff may be unaware of their background, and treat behaviours that are a reaction to loss as signs of mental ill-health rather than grief. Diagnostic overshadowing of this nature, leading to inappropriate 'treatment' of quite natural responses to loss can make a difficult situation much worse (Bicknell, 1983).

Resistance to the negative stereotyping of people with intellectual disabilities is vital in order to stimulate further progress, both ideologically and materially. The loss of a parent will be a devastating experience for the majority of people, but to avoid the additional losses a person with intellectual disabilities may encounter, increased social integration is essential.

"Exposure to cues relating to bereavement (rather than avoidance of these) have been shown to be crucial in the recovery from grief," (Hollins and Esterhuyzen, 1997).  Complicated grief is more likely to emerge in the absence of preparation for loss through social cues or the opportunity to be actively prepared, and through the exclusion and lack of emotional support at times of loss.  Read and Elliot (2007) report support available across the UK to people with intellectual disabilities who have experienced bereavement is ‘patchy at best’.  They go on to describe a strategic approach through a bereavement framework which can provide an holistic support when integrated into the delivery of care. Therapeutic supports to bereaved individuals with intellectual disabilities have also been shown to offer effective interventions to support grief (Blackman 2003).  Dowling et al. (2006) demonstrated that with slight practical adjustments, generic bereavement counsellors are able to offer effective counselling to individuals with intellectual disabilities.  The challenge is to make this routine practice amongst counselling providers.

The following case study demonstrates how someone can be supported by the everyday social rituals within a family setting to cope with the trauma of loss through death, or as noted above to be exposed to the social cues relating to bereavement and loss.

Case Study:

James a forty-two year old man with intellectual disabilities, lived at home with his parents, his brothers and sister had left home and the three remaining developed a mutually loving and supportive relationship, within which James played a key part. James's father became ill, he was taken into hospital and it was clear that he would not recover. James was taken to visit his father in hospital, he had been worried about his dad, but was relieved to see that he looked comfortable and was being well cared for. James's mother informed the day centre he attends, of the situation, she asked them to be sensitive to the fact that James was fully aware of what was going on and that he may want to talk about it. The day centre staff supported James to make a card for his father and were able to answer some of his questions.

James was able to say goodbye to his father before he died; they spent some time alone together, and this is something that James fondly remembers. James accompanied his mother to view his father's body. His mother says that although James was a little anxious at first, he was a great comfort to her and she could not have managed without him. Prior to the funeral a 'seniors group' at the day centre invited James to come to one of their meetings, some of them had been to funerals before and were keen to share the experience with James so that he knew what to expect. 

James attended the funeral. He was very sad as his mother had expected he would be but he welcomed people to his home afterwards and was able to offer support to his mother throughout the day. James carries a photograph of his father with him in his wallet and proudly wears his father's watch. He talks openly and spontaneously about his father whom he misses greatly. However, through the recognition of his loss and the support of his grieving, James's bereavement did not provoke undue difficulties.
There are significant positive steps being taken in the provision of support services aiming to alleviate difficulties and improve outcomes following bereavement in the lives of people with intellectual disabilities. They form part of continuing progressive development in both attitude and in practice. However, it is not a time for complacency but for continued action towards replacing 'common sense' attitudes supporting exclusion, and promoting a new 'common sense' of inclusion in all aspects of people's lives.

Some points to bear in mind:

1.      Euphemisms about death are unhelpful to people with intellectual disabilities. For example: Telling someone that their mother or father has 'gone to sleep' may seem a kind way to break the news of their death, but may in fact be the seed of later problems. Sensitively tell people what has happened using plain language (Tuffrey-Wijne, 2012). There are several resources available to help with this:

· “When Somebody Dies” - Books Beyond Words

· “When Dad Died” – Books Beyond Words

· “When Mum Died” – Books Beyond Words

Books Beyond Words tell stories in pictures to help people with learning and communication difficulties explore their own experiences.

· “Let’s Talk About Death” - Down’s Syndrome Scotland

This is an easy-read publication aimed at anyone with a learning disability who wishes to learn more about the process of death.

· BILD http://www.bild.org.uk/EasySiteWeb/GatewayLink.aspx?alId=2523 BILD provide a useful factsheet on bereavement for people with learning disabilities, which is accessible on their website.

· Dying Matters http://www.dyingmatters.org/page/people-learning-disabilities Dying Matters is a national coalition of 30,000 members, which aims to change public knowledge, attitudes and behaviour towards dying, death and bereavement.

2.      Address people with intellectual disabilities directly, irrespective of whoever is with them. If they have experienced bereavement say you understand how sad and painful this must be

3.      Always enquire into the bereavement history of patients who have an intellectual disability, and take into account other losses that may have resulted, such as moving home or losing contact with other significant people. Make sure that these are recorded.

4.      People with intellectual disabilities may express difficult emotions through their behaviour. If there has been a change in one of your patients with intellectual disabilities, ask about any past bereavements or other significant losses. These may not necessarily be recent, but past losses could help explain current actions.

REFERENCES

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This article was first published on the site in 2002. It was revised and updated in 2016