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In the current issue of the NEJM there is an artivle on stress associated
with Caregiving. While the article is about people with Dementia, a lot is
applicable to PD care givers like myself. The URL is
"http://content.nejm.org" without the www. In the same issue is also the
the article by Krack et al on long term issues in STN which was already
referred to on these lists..

Background Although family caregiving has been intensively studied in the
past decade, little attention has been paid to the impact of end-of-life
care on caregivers who are family members of persons with dementia or to
the caregivers' responses to the death of the patient.


Methods Using standardized assessment instruments and structured questions,
we assessed the type and intensity of care provided by 217 family
caregivers to persons with dementia during the year before the patient's
death and assessed the caregivers' responses to the death.


Results Half the caregivers reported spending at least 46 hours per week
assisting patients with activities of daily living and instrumental
activities of daily living. More than half the caregivers reported that
they felt they were "on duty" 24 hours a day, that the patient had frequent
pain, and that they had had to end or reduce employment owing to the
demands of caregiving. Caregivers exhibited high levels of depressive
symptoms while providing care to the relative with dementia, but they
showed remarkable resilience after the death. Within three months of the
death, caregivers had clinically significant declines in the level of
depressive symptoms, and within one year the levels of symptoms were
substantially lower than levels reported while they were acting as
caregivers. Seventy-two percent of caregivers reported that the death was a
relief to them, and more than 90 percent reported belief that it was a
relief to the patient.


Conclusions End-of-life care for patients with dementia was extremely
demanding of family caregivers. Intervention and support services were
needed most before the patient's death. When death was preceded by a
protracted and stressful period of caregiving, caregivers reported
considerable relief at the death itself.

K. F. Etzold CG Carline

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