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Journal of Family Nursing, Vol. 9, No. 1, 38-58 (2003)
DOI: 10.1177/1074840702239490

Family Experiences in the Journey Through Dementia Diagnosis and Care

Cynthia S. Teel, Ph.D., R.N.

University of Kansas School of Nursing

Paula Carson, Ph.D., R.N.

South Dakota State University

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.

Key Words: caregiving • rural • Alzheimer’s disease • cognitive disorders


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J. Perry
Daughters Giving Care to Mothers Who Have Dementia: Mastering the 3 R's of (Re)Calling, (Re)Learning, and (Re)Adjusting
Journal of Family Nursing, February 1, 2004; 10(1): 50 - 69.
[Abstract] [PDF]