Information Available to Patients Diagnosed with Dementia: Interviews With Caregivers and Their Experiences

Abstract

Purpose: Dementia is a prevalent problem for older adults and their families. Early intervention and a multidisciplinary approach for treatment have been linked to better quality of life. The primary objective of this study was to discover what information is available to patients with dementia upon diagnosis and how beneficial the information given is perceived by the primary caregivers. Secondary objectives included types of resources most utilized by the caregiver and how caregivers found out about such resources. Methods: A qualitative study design was employed using snowball sampling methods and semi-structured interviews among primary caregivers (n= 5) of patients with Alzheimer’s Disease (n= 3), Lewy Body Dementia (n= 1), and Dementia Unspecified (n= 1) respectively. Thematic coding methods were used to identify potential barriers to accessing timely information regarding disease prognosis and optimal resources. Results: Several themes emerged from caregiver interviews. Central themes found among the caregivers include: 1.) chronic grief 2.) chronic frustrations 3.) chronic guilt 4.) total responsibility of care. Several subthemes emerged that compound upon these caregiver experiences including provider related parries such as lack of quality information, and access barriers including difficulty finding community resources. Conclusion: Caregivers interviewed in this study perceive support from their health care team in general, yet have limited perceived support in navigating how to access community resources. Patients and their families need guidance and support from the health care team upon diagnosis, yet also need ongoing support and education while caring for a loved one with Dementia.