Date of Award

2024-08-31

Degree Name

PhD Nursing

Dissertation Committee

Jane M. Georges, PhD, RN, Chairperson Christine Nibbelink, PhD, RN, Committee Member Bernard Michlin, MD, Committee Member

Keywords

caregiver, dementia, eHEALS, FAST, information needs, support needs

Abstract

Background: Current research indicates that caregivers of dementia patients often experience a great deal of stress related to caregiving. Most of these caregivers are informal caregivers without prior knowledge or training in dementia care. Previous studies indicate that informal caregivers often experience stress during this postdiagnosis period due to a lack of high-quality and available information, education, and support services tailored to meet the unique needs of families caring for a dementia patient. Currently published approaches to providing caregivers with information are largely centered on a one-size-fits-all approach.

Purpose: This descriptive qualitative study was conducted to examine the lived experience of lay caregivers of persons with dementia in obtaining information to support decision-making and the potential for the use of consumer education technology as an information source.

Aims: The specific aims of this study were to: (a) explore caregivers' experiences in obtaining information regarding patients diagnosed with dementia and explore sources of information caregivers seek to access to support their decision-making in caring for elders with dementia; (b) explore caregivers’ perceptions of stages of dementia as a continuum in relation to information seeking; and (c) explore current usage and attitudes of dementia caregivers in accessing and using consumer information technology for support through their caregiving experience.

Methods: A descriptive qualitative study using a constructivist approach was used to investigate dementia caregivers’ experiences in obtaining information and to explore the current usage and attitudes of dementia caregivers in using consumer informationtechnology. Convenience sampling resulted in recruiting 15 adult participants who were informal family caregivers for a patient with dementia. Saturation was achieved when new data did not appear to yield any additional thematic categories. Semi-structured audio-recorded interviews, demographic data information, and two surveys (eHEALS and FAST) were administered. Data analysis was completed using descriptive statistics and inductive thematic analysis.

Findings: Five major themes with sub-themes emerged from the analysis of participants experiences: (1) Caregiver support needs; (2) Ability to approach the patient; (3) Caregiver Knowledge and education needs, (3a) Resource needs, (3b) Casting about for information; and (4) Caregiver self-confidence, (4a) Lack of medical knowledge, (4b) Ability to identify subtle changes within the patient that may warrant attention.

Implications for Research: Findings suggest a need for a single point of information that can provide service coordination and support at each point in the illness trajectory to improve the efficiency and quality of care of patients with dementia. Future research into ways to provide caregivers with access to relevant and reliable information is needed to promote enhanced high-quality care for the person with dementia.

Document Type

Dissertation: Open Access

Department

Nursing

Download

Available for download on Wednesday, September 30, 2026

Share

COinS