Loss and bereavement in people with dementia


This information sheet addresses the lack of help and information available for formal and informal carers of people with dementia who are bereaved.

It is recognised that carers experience anticipatory losses when caring for someone with dementia and advice available to help them. However the experience of Alzheimer Scotland’s Helpline and carer support services have highlighted the challenges that bereavement poses for people with dementia in coming to terms with their losses both past and present.

People with dementia may not have the cognitive skills to resolve or make sense of their grief; however loss of cognition should not be confused with an absence of emotion. We know that however severe the dementia it is possible that the person may experience emotions and that this may be expressed by a variety of behaviours including fear, agitation, restlessness, distress, and suspicion. Impaired short term memory adds to the distress of bereavement as difficulties in retaining information mean that the loss of the person is relived anew each time there is discussion about the person who has died.

In the absence of research and scant information available, the information sheet relies on best dementia practice and this includes person centred care, validation therapy and reminiscence work. It provides practical tips and advice on telling the person, planning and attending the funeral and after the funeral. It also provides strategies for coping with ‘awkward’ questions.

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