The Impact of Dementia Severity on Caregiver Burden in Frontotemporal Dementia and Alzheimer Disease

Abstract

Caregiver burden is greater in frontotemporal dementia (FTD) than in Alzheimer disease (AD). However, little is known of the impact of the 3 main clinical variants of FTD- behavioral-variant frontotemporal dementia (bvFTD), semantic dementia (SemDem), and progressive nonfluent aphasia (PNFA)-or the role of disease severity in caregiver burden. The Zarit Burden Inventory was used to measure caregiver burden of bvFTD (n=17), SemDem (n=20), PNFA (n=20), and AD (n=19) patients. Symptom duration, caregiver age, and relationship type were matched across groups. Moreover, a number of caregiver (mood, social network) and patient variables (functional disability, behavioral changes, relationship with caregiver, and dementia stage) were addressed to investigate their impact on caregiver burden. Caregivers of bvFTD patients reported the highest burden, whereas SemDem and PNFA caregivers reported burden similar to AD. A regression analysis revealed that caregiver burden in FTD, regardless of subtype, was explained by a model combining disease staging, relationship changes, and caregiver depression. Burden increased with disease severity in FTD. This study is the first to show that caregivers of SemDem, PNFA, and AD patients show similar burden, while confirming that bvFTD caregivers show higher burden than AD caregivers. More importantly, this study demonstrates that burden worsens with disease progression in FTD.

Identifying Cognitive and Demographic Variables That Contribute to Carer Burden in Dementia

“…For carers, dementia often leads to a diminished bond with the patient, depression and social isolation [1,2]. The importance of establishing the variables that contribute most to carer stress and burden cannot be understated, as this will enable clinicians and policy makers to identify those carers who are most at risk and design targeted interventions to alleviate burden when possible.…”

“…Previous research indicates that among carers of dementia patients, those who report higher levels of depression [3], neuroticism [4] or less caring relationships with the patient [1] experience increased carer burden. Specific mood/behavioural changes such as apathy and depression in patients with Alzheimer's disease (AD) [5] and disinhibition in patients with frontotemporal dementia (FTD) [6,7] have also been linked with high carer burden.…”

Comparative Analysis of Informal Caregiver Burden in Advanced Cancer, Dementia, and Acquired Brain Injury

“…35 Additionally, a cutoff score of 24 (within the ZBI total range of 0e88) has been statistically derived for medical practitioners to identify and assess caregivers at risk of depression and encourage them to seek support. 37 Some differences in caregiver burden between diagnostic groups have been identified using the ZBI (total burden score), specifically between types of dementia, 38 dementia and nondementia patients, 39,40 and between Parkinson's disease and dementia caregivers in Tanzania. 41 Caregivers of patients with advanced cancer, dementia, and ABI may face not only some common challenges but also some differences in burden.…”

Behavioural Changes in Dementia and their Impact on Professional Caregivers: A Grounded Theory Approach

“…These included disruption concerning eating patterns, sleeping patterns, mood, engagement and aggression (Hayward et al, 2012;Hooren & Waterink, 2015;Mioshi et al, 2013) which often appeared to impact the way the caregivers felt (Hall et al, 2014). A lack of understanding around these behaviours appeared to lead to negative feelings regarding those residents suggesting the finding of Stokes et al (2014) regarding family caregivers' understanding may also be applicable to professional caregivers.…”