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Bereavement and Grief in Neurodegenerative Disease (BAGINS)

The aim of this study is to look at the experience of grief and loss in AD, bvFTD and MND, to see if there are differences between different diagnoses, and to use that information to develop resources and an intervention to address grief.

Aims

The aim of this study is to look at the experience of grief and loss in AD, bvFTD and MND, to see if there are differences between different diagnoses, and to use that information to develop resources and an intervention to address grief.

Methods:

This study involves three stages:

An exploratory stage, where we look at grief in different neurodegenerative diseases to see if the AD model fits using online questionnaires. A subset of participants will be invited to partake in an additional phone interview.

A development stage where we use the information in the literature, plus the results of the exploratory stage, to develop a manualised intervention to trial with spousal caregivers. This will involve analysis and integration of the information from the first stage, with the expertise of a multidisciplinary team of clinicians.

An intervention stage where we look at the feasibility and effectiveness of the intervention in a single-group repeated measures pilot study.

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