School of Nursing, University of Kansas Medical Center, 3901 Rainbow Boulevard, Kansas City, KS 66160, United States of America.
Department of Rehabilitation Sciences, The University of Oklahoma Health Sciences Center, Oklahoma City, OK 73126, United States of America.
Appl Nurs Res. 2020 Apr;52:151225. doi: 10.1016/j.apnr.2019.151225. Epub 2019 Dec 24.
With life expectancy on the rise and the baby boomer generation growing older, Alzheimer's disease (AD) will affect more individuals and families than ever before. Therefore, it is imperative that healthcare providers identify the objective and perceived factors which positively and negatively affect the experience of progressing through AD.
The goal of this exploratory qualitative research is to begin to develop an in-depth description of the perceptions related to life satisfaction in early-to mid-AD from the patient and caregiver perspectives.
A convenience sample of four community-dwelling AD patients and caregivers were recruited from a local Alzheimer's Association support group. Semi-structured interviews were conducted together with participants and caregivers.
The major findings of this study uncovered a process by which 1) changes in activity occur in response to the diagnosis 2) dyads discover new ways in which to mutually adapt and cope and 3) the person with dementia remains meaningfully engaged in their lives with a generally positive perception of quality of life (QoL).
These preliminary findings are a promising line of research and have implications for Alzheimer's patients, their families, and person-centered care. By accounting for individual levels of baseline engagement and taking each patient's perspective into account, nurses have the ability to identify individual changes over time and positively impact the patient's QoL. Further studies with larger and more diverse samples are needed to expand upon this preliminary framework.
随着预期寿命的延长和婴儿潮一代的老龄化，阿尔茨海默病（AD）将比以往任何时候都影响更多的个人和家庭。因此，医疗保健提供者必须确定积极和消极影响 AD 进展体验的客观和感知因素。
本探索性定性研究的目的是开始从患者和护理人员的角度深入描述与早期至中期 AD 相关的生活满意度的看法。
从当地的阿尔茨海默氏症协会支持小组中招募了四名居住在社区的 AD 患者和护理人员作为方便样本。与参与者和护理人员一起进行了半结构化访谈。
这项研究的主要发现揭示了一个过程，即 1）诊断后活动发生变化；2）二人组发现相互适应和应对的新方法；3）痴呆症患者仍然以积极的生活质量（QoL）感知参与他们的生活。
这些初步发现是一个有前途的研究方向，对阿尔茨海默病患者、他们的家庭和以患者为中心的护理具有重要意义。通过考虑到基线参与的个体水平并考虑到每个患者的观点，护士能够识别随时间的个体变化，并积极影响患者的 QoL。需要进一步进行更大和更多样化的样本研究，以扩展这一初步框架。
