“A Little Bit of Their Souls”: Investigating the Concept of Dignity for People Living With Dementia Using Caregivers’ Blogs

Abstract

Dignity is an important component of quality of life and a core value of family nursing care. Few studies have explored dignity in community-dwelling adults with dementia. This study used blogs written by caregivers to explore the concept of dignity in dementia caregiving. A template analysis of blogs written by family caregivers of people with dementia was conducted. Four themes were defined a priori in relation to Jacelon’s model of dignity: perceived value from others, self in relation to others, behavioral respect, and self-value. Caregivers wrote about experiences that related to each of the four a priori themes from Jacelon’s model. In addition, the theme of dignity by proxy was derived from the analysis. By understanding the concept of dignity in the context of dementia family caregiving, interventions and services can be developed to improve family quality of life through dignifying, family-focused care.

Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic

“…Dignity and dignifying care are of high importance to people living with dementia and their family caregivers ( Anderson et al, 2021 ). In contrast to findings from others ( Bacsu et al, 2021 ), the concept of maintaining the human rights of people living with dementia was a theme within our sample.…”

“…Among U.S.-based tweets in particular, there was an overarching sense of users trying to protect those living with dementia from the virus and from societal/political pressures meant to detach people living with dementia from the rest of society because of their age or physical conditions. This advocacy may be in response to continued stigmatizing language associated with dementia on social media platforms ( Cheng et al, 2018 ; Oscar et al, 2017 ; Robertshaw & Babicova, 2021 ) and the perception among society of those living with dementia lacking value within society itself ( Anderson et al, 2021 ; Heggestad et al, 2013 ). Social media offers health care providers, researchers, and service organizations platforms to disseminate education and reputable information to combat stigma in an effort to support the dignity and human rights of people living with dementia ( Cheng et al, 2018 ).…”

Narrating Perinatal Obsessive-Compulsive Disorder Through Blogs

“…Examples of recent qualitative research using blogs include experiences of caregivers for persons living with dementia (Anderson et al, 2021), and orthorexia nervosa, which is an obsession with healthy or "clean eating" (Greville-Harris et al, 2020). Murphy et al (2020) conducted a scoping review of research exploring the experiences of persons with mental health diffi culties using blogs.…”

The Impact of the COVID-19 Pandemic on Family-Focused Care of People With Alzheimer’s Disease and Related Dementias

“…Finally, people living with dementia and their family caregivers report the importance of dignity and dignifying care (Anderson et al, 2021). Yet, in many places around the 1108200J FNXXX10.1177/10748407221108200Journal of Family NursingAnderson and Jao…”

“…Finally, people living with dementia and their family caregivers report the importance of dignity and dignifying care (Anderson et al, 2021). Yet, in many places around the world, particularly in the United States, the response to the public health emergency presented by COVID-19 has been highly politicized (Halpern, 2020).…”