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Lewy body dementias (LBDs) represent a spectrum of dementias that are associated with the presence of Lewy bodies in the brain and that dramatically impact both the person diagnosed and the family caregiver. LBD charities provide education of the public and health-care professionals, emotional support to families, and advocacy to policy-makers on the needs of LBD families and advance research. The US-based Lewy Body Dementia Association and the Lewy Body Society in the UK play an important role in reducing the burden that LBD places on families and society and provide leadership on issues affecting LBD families. Health-care providers are encouraged to refer families upon diagnosis to LBD charities as an additional resource to clinical care.

Advocacy, education, and the role of not-for-profit organizations in Lewy body dementias