‘We can't keep going on like this’: identifying family storylines in young onset dementia

Abstract

Link to this article: http://journals.cambridge.org/abstract_S0144686X13000202How to cite this article: PAMELA ROACH, JOHN KEADY, PENNY BEE and SION WILLIAMS (2014). 'We can't keep going on like this': identifying family storylines in young onset dementia. ABSTRACTIn this study, we identify the dominant storylines that were embedded in the narratives of younger people with dementia and their nominated family members. By implementing a longitudinal, narrative design underpinned by biographical methods we generated detailed family biographies with five families during repeated and planned research contacts (N = ) over a --month period between  and . The application of narrative analysis within and between each family biography resulted in the emergence of five family storyline types that were identified as: agreeing; colluding; conflicting; fabricating; and protecting. Whilst families were likely to use each of these storylines at different points and at different times in their exposure to young onset dementia, it was found that families that adopted a predominantly 'agreeing' storyline were more likely to find ways of positively overcoming challenges in their everyday lives. In contrast, families who adopted predominantly 'conflicting' and 'colluding' storylines were more likely to require help to understand family positions and promote change. The findings suggest that the identification of the most dominant and frequently occurring storylines used by families may help to further understand family experience in young onset dementia and assist in planning supportive services.

‘I try my best … I try to relieve the burden of my mum’: a narrative analysis of the everyday care-giving experiences for five intergenerational Singapore-Chinese families where one member has dementia

“…In this study, conducted in the United Kingdom with younger people with dementia and their families, it was seen that families who adopted a mainly 'agreeing' storyline more likely to work together to overcome challenges in everyday life. In contrast, the authors reported that families who adopted a mainly 'conflicting' and 'colluding' storyline were more likely to require help to understand family positions and promote change (Roach et al 2013). Whilst this is an interesting contribution, a limitation of the study was that all participants were White British and therefore the cultural context is quite specific to this population group.…”

“… Last para in page 8 and para 1 in page 9: As an illustration of this complexity, Rolland's (2012) systembased, biopsychosocial model on family systems broadly defined the 'family' as all persons involved in the family unit and caregiving, but it did not clearly include members outside the immediate family. However, where literature exists on multiple intergenerational perspectives on caring at home for a person living with dementia, ascertaining personal biography and family storylines were suggested as important determinants (Roach et al 2013). In this study, conducted in the United Kingdom with younger people with dementia and their families, it was seen that families who adopted a mainly 'agreeing' storyline more likely to work together to overcome challenges in everyday life.…”

What next? Experiences of social support and signposting after a diagnosis of dementia

“…There has been a notable rise in UK dementia diagnoses since the launch of a National Dementia Strategy in 2009 (Donegan et al, ), increasing by 50% since 2012 (Department of Health, ). There were estimated to be 850,000 people with dementia in the UK by 2015 (Prince et al, ) including over 40,000 individuals under 65 (Roach, Keedy, Bee & Williams, ). NI has the highest per capita percentage of dementia diagnoses (Donegan et al, ), with there being at least 23,000 diagnosed (Dementia Together NI, ) and approximately 7,000 undiagnosed (Mynes & Byrne McCullough, ).…”

Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia

“…In the United Kingdom (UK), demographic data has revealed that in 2014 there were 835,000 people who had a dementia (Alzheimer's Society, 2014a), a figure that includes over 40,000 younger people, i.e. 65 years of age or below, whose needs usually fall outside of mainstream service provision and support (Roach, Keady, Bee, & Williams, 2014). Broadly speaking, in the UK, two thirds of the total number of people with dementia live at home with one third living alone: the total number of people with dementia living in the UK is expected to reach over 2 million by 2051 (Alzheimer's Society, 2015 p.3).…”