Abstract
ObjectiveFamily caregivers of people with dementia perform duties that are important for maintaining their loved one's overall well-being. However, it is not yet clear how these caregivers' quality-of-life affects their ability to meet the care demands of their loved ones. The purpose of this study is to utilize a mixed methods approach in investigating how family caregiver quality-of-life affects the care provided to people with dementia. Family caregivers will be recruited from the Rochester, New York area to participate in focus groups or one-on-one interviews. In addition to the qualitative data obtained, caregivers will complete questionnaires regarding their own quality-of-life (e.g., health status, socioeconomic) as well as the care provided to their loved ones with dementia (e.g., how the care provided meets the needs of the care recipient, time spent). A convergent mixed methods approach will be used to analyze the qualitative and quantitative data obtained.ResultsData from the interviews will be transcribed verbatim and then analyzed qualitatively. Quantitative data from the questionnaires will be analyzed using IBM SPSS Statistics software. A convergent mixed methods approach will be applied to the datasets to help shed light on the relationship between family caregiver quality-of-life and the care provided to people living with dementia. Understanding of this relationship will make it possible to develop initiatives that better address caregiver needs.
Highlights
Primary informal caregivers are mainly responsible for the care of people with dementia including Alzheimer’s disease (AD)
In addition to the qualitative data obtained, caregivers will complete questionnaires regarding their own quality-of-life as well as the care provided to their loved ones with dementia
A convergent mixed methods approach will be applied to the datasets to help shed light on the relationship between family caregiver quality-of-life and the care provided to people living with dementia
Summary
Primary informal caregivers are mainly responsible for the care of people with dementia including Alzheimer’s disease (AD). In addition to the stressful nature of caregiving, the care recipient’s condition tends to decline over time, making the caregiving role more demanding [5]. This may in turn affect the caregiver’s ability to meet their loved ones’ care needs, resulting in a decline in the quality of care provided to the care recipient as the disease progresses. In a published systematic review examining the relationship between caregiver QoL and the quality of care provided [7], we found only one study that was somewhat relevant [8] This single study did not examine the association between QoL and level or quality of care provided to people with dementia. It suggested that the main reason for an absence of research into this topic was the absence of an instrument (i.e. questionnaire) for measuring quality of care provided to care recipients with dementia [7]
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