End-of-life care and bereavement: effect on family carers

Alzheimer’s disease (AD) and other progressive dementias result in a gradual loss of cognitive and functional abilities. The patient with dementia eventually becomes dependent on the carer for all activities of daily living. This dependence—combined with behavioural symptoms—necessitates constant supervision, which is a great burden on the carer. Because the disease duration in AD and other progressive dementias is about 8 years, carers have to cope with functional impairment and behavioural symptoms for a long time. Therefore, it is not surprising that Schulz and colleagues 1 recently reported that almost all carers felt relieved after the death of the patient with dementia. Most carers also felt that death came as a relief to the patient. It is not clear from the paper whether this assumption was based on the carer’s perception that the patient’s quality of life was very poor, or that the patient was suffering: two-thirds of the carers reported that the patient had been in pain “often” or “all the time”. Pain may not be the only cause of the patient’s discomfort: individuals with dementia experience several other symptoms in the end stages of the disease (shortness of breath, skin breakdown, agitation, difficulty swallowing), some of which are more common than pain. 2 Unfortunately, the care of many patients dying with dementia is suboptimal and does not adequately control these symptoms. Care could be greatly improved by enrolling the patient on a hospice programme designed to relieve pain and other symptoms during the dying process. Hospice programmes also provide bereavement support, which is not available to the carers of patients dying at home or in most long-term care facilities. Pain management can be also improved by use of a formal scale for the assessment of pain in noncommunicative individuals. 3 If the pain severity can be expressed as a score, adequate treatment of pain can more likely be provided. Bereavement support is very important for carers of individuals with dementia: almost half become depressed after the patient’s death and a third are still depressed 1 year after the patient’s death. Depression caused by bereavement may last even longer: substantial depression can last almost 2years after the death of the care recipient. Carers who thought more about caregiving after death of the patient reported greater depression, stress, and social isolation than those who thought about it less. 4 Depression