The burden of care: the impact of HIV-associated dementia on caregivers.

It has been suggested that up to 15% of patients with AIDS may develop HIV-associated dementia. The syndrome may be either abrupt or insidious and is characterized by poor prognosis. Increasing cognitive impairment will necessitate the patient receiving a substantial amount of care and support in the community in addition to medical treatment and periods of hospitalization. The impact of caregiver burden is reasonably well documented in Alzheimer's disease, but there is a dearth of literature relating to caregiving and HIV-associated dementia. The current investigation is an observational study based on a small group of individuals which evaluates the experiences of these particular individuals as they care for their partner, friend, or son with HIV-associated dementia. The caregivers experience the stresses described in the non-HIV dementia literature; however, the nature of HIV disease means that there are issues involved in caring for this patient group that distinguish it from other types of dementia care; these include difficulties relating to specific HIV medical problems and problems with service shortfalls. The caregiver is more likely to be a parent or partner than a child of the patient due to the early age onset seen in this disease compared with Alzheimer's disease. Caregivers express their need for information about dealing with the everyday physical, behavioral, and emotional challenges and about services and benefits available. The interviewees expressed concerns over a perceived lack of communication and information from professionals involved in the patient's care and in the provision of services. The study offers an insight into the relevant issues affecting such caregivers and suggests areas of unmet needs that might be addressed in future service provisions.