Home and Community Care Digest

Home and Community Care Digest February 2004 : 0-0

Timing is important in offering support to unpaid caregivers of those in end-of-life care

Abstract

Providing end-of-life care for a family member with dementia is very demanding and can cause significant financial, emotional and physical distress. Although the death of a family member increases symptoms of depression in caregivers, it may also be perceived as a relief for both care recipients and caregivers. Bereavement interventions designed to support unpaid caregivers are likely to have the largest benefit when offered prior to the death of a care recipient. Policy makers may wish to provide extensive support for unpaid caregivers engaged in end-of-life care, but it may be appropriate to target bereavement support programs only to those who require such support.
Background: Providing care for a chronically ill family member can cause high levels of stress and increase the risk of physical and mental illness and death. The Resources for Enhancing Alzheimer's Caregiver Health (REACH) study in the United States was designed to assess the psychological and physical impact of caring among family members of person's with Alzheimer's disease. This paper reports on the burden of caregiving experienced in the final year of life for individuals with dementia and examines the short- and long-term impact of bereavement on unpaid caregivers.

Methods: Data were collected from 1222 pairs of individuals with dementia and their caregivers recruited from 6 US cities (Boston, Massachusetts; Birmingham Alabama; Memphis, Tennessee; Miami, Florida; Philadelphia, Pennsylvania; Palo Alto, California). Baseline data were collected on the characteristics of care recipients and caregivers, the extent of assistance provided to the care recipient, and the amount of distress and depressive symptoms experienced by caregivers. Follow-up questionnaires were administered at 6, 12 and 18 months. This paper focuses on 217 caregivers where the care recipient died during the course of the study. Data from the assessment just prior to the care recipient's death, and all assessments following death, were included. The post-death questionnaires were designed to assess the impact of bereavement on caregivers.

Findings: Most caregivers in this analysis had provided at least 1 year of care prior to the study (median = 3 years). 18% of caregivers quit their jobs to provide care, while 48% of those employed reduced their hours of work. At the assessment immediately prior to death, most care recipients had moderate-tosevere cognitive impairment. Half of the caregivers reported spending more than 11 hours per week assisting care recipients with activities of daily living (e.g. dressing, bathing, eating) and more than 35 hours per week with instrumental activities of daily living (e.g. housekeeping, meal preparation, shopping). 65% said that they were prepared for the death of their care recipient, and that death was somewhat or very much a relief for the care recipient (90%) and themselves (72%). The extent of depression among caregivers increased at the time of the care recipient's death but decreased to prebereavement levels within 15 weeks thereafter. Symptoms of depression were even less common 1-year after death. Prior to the recipient's death, about half of the caregivers received help from a home health aide (46%) and from unpaid sources such as other family members (56%). In contrast, only 21% used bereavement related services after death, and 14% reported having needed these services.

Conclusions: Providing end-of-life care for a family member may help prepare caregivers for the death of their loved ones. Bereavement interventions designed to support unpaid caregivers are likely to have the largest benefit when offered prior to the death of a care recipient rather than after their death. Policy makers may wish to provide extensive support for unpaid caregivers engaged in end-of-life care, but it may be appropriate to target bereavement support programs only to those who require such support.

Reference: Schulz R, Mendelsohn AB, Haley WE, et al. "End-of-life care and the effects of bereavement on family caregivers of persons with dementia". New England Journal of Medicine, 2003; 349: 1936 - 1942.

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