For all of us, bereavement can be incredibly hard to bear, whether it involves the death of a family member, a friend, a colleague, or even a pet. The sense of loss can be overwhelming and in the difficult times that follow a death, we all need help and support, both emotionally and practically.
While we all struggle to navigate bereavement, it can be especially hard for adults with learning disabilities. Depending on the nature of the disability, individuals may struggle to fully comprehend the gravity and irreversibility of the situation, and might find it difficult to communicate their feelings clearly.
There are many other factors besides an individual’s disability which may affect their capacity to process news of a death: the strength and nature of the relationship with the deceased; whether the death was sudden or expected; what their care and support network looks like; and cultural or religious factors, to name but a few.
It can be tempting to try and shield individuals from grief, out of a desire to protect them, or because we feel anxious about delivering such a difficult message. We may, understandably, worry about whether they will be able to process what has happened, and may even doubt our ability to communicate this clearly and gently in a way that is easily understood.
On top of the emotional ramifications, there are the subsequent practical issues which may affect an individual in the event of a death, depending on their relationship to the person who has died. For example, when a family member who is also a caregiver dies, there can be numerous practical implications to consider: Who will take over care? Where will the individual live? How will they adapt to a new carer or environment? Will the financial situation be impacted?
Dealing with the news of a death causes upheaval and uncertainty that can be immensely distressing for an individual with learning disabilities, as well as those around them. Again, depending on the extent of their mental capacity and disability, they may not be able to communicate their questions and concerns easily, and might be left feeling isolated, grief-stricken, confused, and even angry.
In many ways, supporting adults with learning difficulties through bereavement is no different to how we would support any individual at such a difficult time. After all, everyone has a different and unique way of navigating bereavement, whether they have a disability or not. As Maureen Oswin, writer and researcher into childhood learning disabilities, said,
‘Each person with learning disabilities is an individual and will grieve as an individual’.
That said, there are a number of strategies that can be helpful to consider when supporting an adult with learning disabilities through bereavement.
We all deserve to know the truth about death, no matter how difficult that information might be to impart or receive. While some adults with learning disabilities may have a limited understanding of the concept of death, we still need to ensure that we are not excluding them from what is going on, and we should check any prejudgments we may have about how they might react.
Being honest, clear and gentle when sharing upsetting news is crucial, even down to the language we use. Using clear, unambiguous words and phrases like ‘death’ and ‘died’, instead of ‘passed away’ or ‘gone to sleep’ can help avoid any confusion or anxiety.
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