Lewy Body Dementia

Abstract

Lewy body dementia (LBD) is a common cause of dementia but to date, little is known about caregiver burden. The Lewy Body Dementia Association (www.LBDA.org) conducted a web-based survey of 962 caregivers (mean age 56y; 88% women). The most common initial symptoms were cognitive (48%), motor (39%), or both (13%). Caregivers expressed concerns about fear of future (77%), feeling stressed (54%), loss of social life (52%) and uncertainty about what to do next (50%). Caregivers reported moderate to severe burden; 80% felt the people around them did not understand their burden and 54% reported feelings of isolation with spousal caregivers reporting more burden than non-spousal caregivers. Only 29% hired in-home assistance while less than 40% used respite or adult day care, geriatric case managers or attended a support group meeting. Lack of service utilization occurred despite two-thirds of caregivers reporting medical crises requiring emergency services, psychiatric care or law enforcement. Caregivers reported preferences for web-based information, directories of LBD expert providers, information on LBD research and location of local support groups. These findings highlight significant unmet needs for LBD caregivers and provide targets for intervention to reduce caregiver burden. Community resources such as the Lewy Body Dementia Association may serve this end, while also providing practical information and support for caregivers.

What happens before, during and after crisis for someone with dementia living at home: A systematic review

“…There is no shared and consistently used understanding of crisis for people with dementia living at home. One of the included studies provided no definition or description of crisis (Galvin et al, 2010), as the primary purpose was not to investigate crisis. Six papers gave examples of crisis.…”

“…There are often many people involved during a crisis. They can include; carer, family, friend, community members (Bowen et al, 2011;Ledgerd et al, 2016;Liken, 2001;Toot, Hoe, et al, 2013), general practitioner (Bruce, 2002), medical services, law enforcement agencies (Galvin et al, 2010;Ledgerd et al, 2016;Toot, Hoe, et al, 2013), specialist crisis intervention teams, and support workers for people with dementia or unpaid/paid carers (Bruce, 2002;Johnson et al, 2013;Ledgerd et al, 2016;Meiland et al, 2014;Toot, Hoe, et al, 2013). The factors that influence decision making and action include the availability of; hospital, respite, specialist and community services (Donnelly, 2017;Ledgerd et al, 2016;Toot, Hoe, et al, 2013), equipment and technology (Ledgerd et al, 2016;Toot, Hoe, et al, 2013), flexible and easily accessible services (Ledgerd et al, 2016;Toot, Hoe, et al, 2013), carer support services (Ledgerd et al, 2016;Toot, Hoe, et al, 2013) and carer knowledge and skill (Bruce, 2002;Sadak et al, 2017).…”

Lewy body dementia: the impact on patients and caregivers

“…Twelve percent of respondents additionally needed inpatient psychiatric care [13]. This again highlights the need for outpatient clinicians to be easily accessible and to utilize a collaborative approach where possible to prevent unnecessary hospitalizations.…”

Efficacy, Safety, and Tolerability of Armodafinil Therapy for Hypersomnia Associated with Dementia with Lewy Bodies: A Pilot Study

“…Patients with DLB have more frequent and clinically significant hallucinations and apathy than do patients with Alzheimer disease [35]. The factors most likely to contribute to caregiver burden were sleep and mood disturbances [36], and the higher distress that DLB caregivers experience is associated with neuropsychiatric symptoms of delusions, hallucinations, anxiety, and apathy [37,38]. Other factors associated with caregiver burden include daytime sleepiness and mood disturbances [36,39].…”

“…The factors most likely to contribute to caregiver burden were sleep and mood disturbances [36], and the higher distress that DLB caregivers experience is associated with neuropsychiatric symptoms of delusions, hallucinations, anxiety, and apathy [37,38]. Other factors associated with caregiver burden include daytime sleepiness and mood disturbances [36,39]. Our study findings of improved overall neuropsychiatric status and reduced hallucinations, agitation, and apathy may relate to the caregivers’ perception that their QOL is better at the end of the study.…”