Introduction

When Alzheimer caregivers are asked what they need most, their response is "a little time to myself" – in other words, respite from the constant demands of caregiving. Respite, counseling services and other caregiver support programs relieve some of the stress on caregivers and can delay or prevent untimely institutionalization of people with Alzheimer's disease.

Our position

Respite programs that successfully meet the needs of Alzheimer caregivers should have the following key characteristics:

Flexible services that accommodate individual family circumstances and the unpredictability of Alzheimer's disease by offering services when the family needs them – including weekends, evenings, overnights and in cases of emergency.

Services in a variety of settings in the home, in adult day centers and short stays in residential care facilities.

Outreach efforts to identify caregivers and let them know that services are available.

Ancillary services like counseling, information and referral and caregiver training are helpful but they cannot substitute for the direct services caregivers need most. Rather, they are most successful when offered as adjuncts to respite care.

What we are doing

The Alzheimer's Association has worked with many states to develop respite programs designed specifically for Alzheimer and dementia caregiver support. Generally, these programs serve families who are not yet eligible for Medicaid and provide services in smaller amounts than would be available under regular home and community care programs.

Publicly supported respite programs exist in some form in a majority of the states. Alzheimer advocates have been instrumental to this effort by working with state lawmakers and in coalition with other stakeholders to seek funding sources and develop a wide range of respite services including: