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 neces sitate the patient receiving a substantial amount of care and support in th e 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 stud y 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 descr ibed 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 difficulti es relating to specific HIV medical problems and problems with service shor tfalls. 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 wi th Alzheimer's disease. Caregivers express their need for information about dealing with the everyday physical, behavioral, and emotional challenges a nd about services and benefits available. The interviewees expressed concer ns over a perceived lack of communication and information from professional s involved in the patient's care and in the provision of services. The stud y offers an insight into the relevant issues affecting such caregivers and suggests areas of unmet needs that might be addressed in future service pro visions.