A Sorrow Shared is a Sorrow Halved: The Search for Empathetic Understanding of Family Members of a Person with Early-Onset Dementia

Hoppe, Silke

doi:10.1007/s11013-017-9549-4

Cited by 8 publications

(5 citation statements)

References 44 publications

(63 reference statements)

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“…This is likely because while such as situation might have similarities to their own, there would be a risk that the listener might not understand the pain of losing the person they knew. In their daily lives, the children are confronted with people's stereotypical views on dementia and resulting lack of understanding, which, as I have argued elsewhere (Hoppe, 2018), can add to their struggles and make their situations more difficult.…”

Section: Discussionmentioning

confidence: 99%

“…Juliette basically says that if she had her own family, her mother's illness would have impacted her differently as she would have been less dependent on her mother and on her mother's care and support. Moreover, her statement reveals that she does not feel understood by her environment and that this lack of recognition makes her angry (see Hoppe, 2018).…”

Section: Having a Parent With Early-onset Dementia Versus Imagining Having A Parent With Late-onset Dementiamentioning

confidence: 99%

“…Van Vliet et al (2013) found that the average time between the first symptoms and diagnosis for early-onset dementia is 4.4 years, compared to 2.8 years for late-onset dementia. This period often involves a lot of confusion, uncertainty and a disruption of 'normal' family practices (Hoppe, 2018;. It is a stressful period for even a grown person, and for a developing child, it can be even more intense.…”

Section: Early-onset Dementiamentioning

confidence: 99%

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Identity work of children with a parent with early-onset dementia in the Netherlands: Giving meaning through narrative construction

Hoppe

2021

Dementia

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Background In the past years an increasing amount of research has been done on the experiences of adult children of a parent with early-onset dementia. However, little is still known about how the socio-cultural context influences the narratives of these children. Aim This study aimed to provide insights into the far-reaching consequences of parental early-onset dementia for adult children in the Netherlands. It illustrates how the experiences of these adult children are shaped by the context they live in. Method 16 in-depth interviews were conducted with adult children of a parent with early-onset dementia in the Netherlands. The interviews offered the children space to reflect on the impact the illness of their parent had on them and their lives. The data were analysed using thematic analysis. Findings This article illustrates that the comparative processes of relating to others' experiences help the children to reflect on the impact that their parent's illness has on their own lives, which in turn aids them in contextualising and making meaning out of their changing lives and relationships. This contextualization and recovery of meaning is shaped by three processes. The first concerns the ways these adult children draw comparisons between their own lives and experiences and those of their peers of the same age group. The second process entails comparative understandings of having a parent with early-onset dementia versus having a parent with late-onset dementia. The third process explores how having a parent with early-onset dementia compares to having a parent with other diseases. The processes of contextualisation which the adult children engage in are shaped by what the children perceive to be normal and thus also by their socio-cultural contexts. Conclusions This article reveals how meaning is created in a constant interplay between the primary experiences of having an ill parent and the socio-cultural context in which the experiences take place. It illustrates how this context provides for particular narratives, which in turn shape how the children are able to give meaning to their experiences.

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Section: Discussionmentioning

confidence: 99%

Section: Having a Parent With Early-onset Dementia Versus Imagining Having A Parent With Late-onset Dementiamentioning

confidence: 99%

Section: Early-onset Dementiamentioning

confidence: 99%

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Identity work of children with a parent with early-onset dementia in the Netherlands: Giving meaning through narrative construction

Hoppe

2021

Dementia

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“…The topics were inspired by the researchers' projects, and included work in progress. With input from the evenings, this work developed into articles on independence and selfreliance (Van den Buuse 2016) [2], empathy (Hoppe 2018a) [12], free will and 'wanting' in daily dementia care encounters (Driessen 2017;Driessen et al 2017) [6], end of life (Lemos Dekker 2018) [10], and stillness and remaking worlds (Vermeulen 2018) [8].…”

Section: Intimacymentioning

confidence: 99%

Learning in Collaborative Moments

Hoppe

Vermeulen

Driessen

et al. 2019

Anthropology in Action

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In this article, we describe experiences with dialogue evenings within a research collaboration on long-term care and dementia in the Netherlands. What started as a conventional process of ‘reporting back’ to interlocutors transformed over the course of two years into learning and knowing together. We argue that learning took place in three different articulations. First, participants learnt to expand their notion of knowledge. Second, they learnt to relate differently to each other and, therewith, to dementia. And third, participants learnt how to generate knowledge with each other. We further argue that these processes did not happen continuously, but in moments. We suggest that a framework of collaborative moments can be helpful for research projects that are not set up collaboratively from the start. Furthermore, we point to the work required to facilitate these moments.

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“…Young-onset dementias encompass a number of progressive neurological conditions with typical symptom onset prior to age 65 years (Hoppe, 2018). Early symptoms can include subtle personality, mood, and behavioral changes that are frequently unrecognized or misattributed to other concerns (e.g., life stress and mood disorders) (Hoppe, 2018; Rosness et al, 2016). Symptoms can eventually lead to significant deterioration in day-to-day functioning, including the ability to work and manage personal responsibilities.…”

Section: Introductionmentioning

confidence: 99%

Psychosocial treatment preferences of persons living with young-onset dementia and their partners

et al. 2021

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Persons living with young-onset dementia and their partners often experience elevated emotional distress as they cope with an unexpected progressive illness during an active life stage (typically ages 45–64 years). Despite their heightened emotional distress, psychosocial resources are both limited and lack the specificity to meet the unique needs of both partners. Our aim was to gain an in-depth understanding of the psychosocial treatment preferences of persons with young-onset dementia and their partners—an important first step in developing a tailored intervention. We conducted semi-structured dyadic interviews with persons with young-onset dementia and their partners ( N = 23) and used a hybrid deductive–inductive approach to thematic analysis. We identified 12 themes across four domains: (1) perceptions of available and lacking resources, (2) preferences for program content, (3) preferences for program format, and (4) barriers and facilitators to participation. Couples indicated there is a lack of specific and family-oriented resources, which can create more stress and relationship strain. Couples endorsed support for a virtual, dyadic intervention delivered shortly after diagnosis focused on providing tools to cope with difficult emotions and symptom progression and enhance communication and meaningful daily living. They also identified potential barriers to program participation and offered suggestions to promote engagement. By using a qualitative approach, we were able to gather nuanced information that can be used to directly inform a feasible, accepted, and person-centered psychosocial intervention for persons with young-onset dementia and their partners.

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A Sorrow Shared is a Sorrow Halved: The Search for Empathetic Understanding of Family Members of a Person with Early-Onset Dementia

Cited by 8 publications

References 44 publications

Identity work of children with a parent with early-onset dementia in the Netherlands: Giving meaning through narrative construction

Identity work of children with a parent with early-onset dementia in the Netherlands: Giving meaning through narrative construction

Learning in Collaborative Moments

Psychosocial treatment preferences of persons living with young-onset dementia and their partners

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