Together but alone: caregiver grief and loss in dementia syndromes
Dementia is defined by loss – loss of specific brain cells due to diseases like Alzheimer’s disease cause changes in a person’s abilities and thinking skills. The losses that accompany dementia produce a form of grief that starts before the person dies and is expressed by family caregivers as loss of relationships, lifestyle, and future plans. Most research exploring grief in dementia has focused on Alzheimer’s dementia (AD) rather than other types of dementia, such as frontotemporal dementia (FTD). FTD is defined by behaviour change, which is known to result in higher levels of caregiver burden. To understand the contribution of grief to caregiver burden, this research aims to look at differences in grief experiences for spousal caregivers of people with AD and FTD. This will form the basis of interventions to support caregivers of people with different types of dementia with the goal of reducing overall caregiver burden.
Kirrily Rogers is an early career neuropsychologist, working clinically across a number of public hospitals with a primary interest in neurodegenerative disease and the effect this has on the lives of people affected. Her research work on caregiver grief and loss is an extension of her PhD research which focused on spouses’ experience of behavioural-variant frontotemporal dementia prior to diagnosis; this also informs her role as a carer support group facilitator for the Australian Frontotemporal Dementia Association, an affiliate of Dementia Australia.