The long good-bye: The final journey of Alzheimer's family caregiving.

摘要

As the average age of the population of the United States rapidly rises, the incidence of certain illnesses such as Alzheimer's disease (AD) increases exponentially. People with AD exhibit progressive mood, behavioral, and functional declines and are typically cared for in the community by families and friends. These responsibilities cause much physical and psychological morbidity among caregivers.; This phenomenological study sought to gain a deeper understanding of the suffering of family caregivers of people with AD. Six family caregivers were interviewed; three caregivers were spouses (1 husband and 2 wives) and three were daughters caring for their mothers. The participants were all white, 50 to 85 years of age, well educated, and members of the upper middle class. The participants were interviewed an average of four times (range 3–4) at intervals of 2 weeks to 12 months. The interviews were audio taped and transcribed verbatim, and the texts were analyzed for themes.; Three meta-themes correspond to three phases in the caregiving trajectory: (a) The Early Years defines a period when caregivers first came to understand their loved one was ill; (b)  The Middle Years of the AD trajectory represents the time in which family caregivers struggled to manage the day to day deterioration of their loved one; and (c) The Final Years of caregiving are a time when families prepared for the final loss—physical death of their loved one. One overarching theme was identified as The Long Good-Bye: The Final Journey of Alzheimer's Family Caregiving. This overarching theme represents the summative experience of caregivers as they are slowly separated—psychologically, emotionally, and physically—from their loved one with AD.; The researcher's interpretation of the narratives concludes that the human experience of suffering is perhaps too complex to lend itself to precise linguistic articulation. Nonetheless, caregivers expressed their belief that a better understanding of their own suffering and the suffering of their family members is vital to assisting people living with this devastating illness.