Family Experiences in the Journey Through Dementia Diagnosis and Care

Abstract

Families caring for loved ones with dementia encounter multiple challenges.This study aimed to describe experiences of families seeking diagnosis and subsequent care and treatment for relatives with dementia. Using a descriptive qualitative approach, 14 family caregivers living in diverse areas of Kansas were interviewed regarding their experiences with dementia diagnosis and treatment. Initially uncertain about symptom interpretation, caregivers encountered marked delays in getting a diagnosis once they sought medical care. The diagnostic process often took several years and visits to numerous physicians, required considerable diligence, and ultimately resulted in feelings of mistrust toward the medical community. Caregivers described the physical and emotional strain of providing care, although support groups facilitated access to some educational and community resources. Nurses are in an opportune position to educate families about dementia and caregiving and to ease the considerable challenges they face by providing more active support during the diagnosis and care process.The population structure in the United States is shifting to include a greater percentage of older adults than ever before.

Dementia early diagnosis: Triggers, supports and constraints affecting the decision to engage with the health care system

“…Speechly et al (2008) report that the first area of delay arose prior to contact with an HCP. Referring to the work of Teel and Carson (2003) and De Lepeleire, Heyman, and Buntinx (1998) they suggest: Some carers arranged support in the first instance rather than seeking medical advice, but in other cases, stigma and misinterpretation of symptoms contributed to the delay. Other studies have reported that carers may be uncertain about the significance of early symptoms or may gradually adapt to the changes The other area of delay was in terms of the time taken to reach a diagnosis after first contact with a health care professional.…”

Videoconference diagnosis and management of Choctaw Indian dementia patients

“…(5, 6) The dementia diagnostic workup is even more difficult for rural patients, involving consultations with multiple specialists over extended time periods. (7) Limited access to specialists means that responsibility for early diagnosis and treatment will fall on primary care physicians. (8) Rural primary care physicians identify limited access to consultants and limited community support and education resources as major barriers to dementia diagnosis and treatment.…”

Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies

“…They can't be sure, so they're just reluctant to diagnose as Alzheimer's." 40 Assessment process was probing, demoralizing and frightening for several patients. "I didn't expect him to get this; it's in my family, not his" (starts to cry).…”