Need for Formal Bereavement Support in Dementia Care is Largely Underestimated

By University College London

The need for grief counseling in dementia care may be substantially underestimated, according to new research led by a UCL academic.

The study into levels of pre-death grief for caregivers of someone with dementia found that the need for formal counseling was around 300% higher than current predictions.

The new International Journal of Geriatric Psychiatry paper was supported by the end of life charity Marie Curie.

The current public health framework model for bereavement care states that most people will adapt to loss through support from their social network but suggests that 10-12% of people will require professional support.

However, this new study found that 30% of dementia caregivers needed professional support.

The paper describes pre-grief as the caregiver's response to "perceived losses in a valued care recipient", adding that, "Family caregivers experience a variety of emotions (e.g. sorrow, anger, yearning and acceptance) that can wax and wane over the course of dementia, from diagnosis to the end of life."

Lead researcher Kirsten Moore, who completed the study while based at the Marie Curie Palliative Care Research Department, UCL Psychiatry, said, "Our research showed that 78% of those caring for someone with dementia reported experiencing pre-death grief. The participants cited that finding the right person to talk to wasn't always easy and that some feel they can't access bereavement services as the person is still alive.

"We can see that the current bereavement models may underestimate the level of formal counseling and support these caregivers need and that services are under-resourced to meet the demand, meaning people are going without much-needed support. These caregivers provide vital care to people living with dementia, and they have a right to access appropriate support for their own well-being."

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