What is it about?

Qualitative thematic analysis of blogs from individuals caring for a family member with dementia near the end of life.

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Why is it important?

The blogs contained information about the needs of family members during a difficult time of life for their loved one with dementia. For example, they encountered challenges with the quality of health care (hospitals and nursing homes), numerous transfers to various care facilities including emergency rooms, difficulty communicating with providers, and not being prepared for the actual experience of watching their loved one die.


These are just some examples of the many ways health care providers can intervene to improve the quality of the end of life experience for advanced dementia patients and their families. For this study, the end of life was within a few months before and a few months after the actual death of the person with dementia. This study provided a unique longitudinal perspective as the blogs were spontaneously written - at the time the experiences occurred - by the caregiver (family member).

Sue McLennon
University of Tennessee Knoxville

Read the Original

This page is a summary of: “At the End We Feel Forgotten”: Needs, Concerns, and Advice from Blogs of Dementia Family Caregivers, Clinical Nursing Research, August 2019, SAGE Publications,
DOI: 10.1177/1054773819865871.
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