Transitions in Family Adjustment to Living with Behavioural Variant FrontoTemporal Dementia Dr. Jenny La Fontaine, Research Fellow Professor Jan Oyebode, School of Dementia Studies University of Bradford, Bradford UK Dr. Michael Larkin University of Aston, Birmingham UK 1
19 September, 2017
INTERNATIONAL ASSOCIATION OF GERIATRICS AND GERONTOLOGY CONFERENCE
DISCLOSURE
I have no relevant commercial relationships to disclose.
AIMS OF THE PRESENTATION
• Background and rationale for this research • Methodology and Methods • Results • Implications for person and family centered practice and research
WHY FAMILIES? • Caregiving frequently occurs in the context of a longstanding relationship which predates the onset of dementia and continues to evolve after diagnosis (Ablitt et al., 2009)
• A range of family members are affected by dementia, which brings changes to roles and relationships thus requiring adjustment and adaptation over time (Merrick et al 2016) • All family members, including the person with dementia, seek to actively address the impact of dementia on their lives (Hellström et al. 2007a; Allen et al. 2009; Roach et al. 2014). • Dementia brings particular psychosocial challenges for family relationships (Rolland 1994)
WHY BVFTD? • Much of the focus of existing research is on Alzheimer’s disease • Less common and rare forms of dementia impact differentially • bvFTD has specific impact on adult higher brain functions including empathy and social behaviour • Significant numbers of people living with bvFTD have a younger age of onset • Limited research has considered how families (including the person with bvFTD) are affected or explored the interventions that might be beneficial
PRIMARY OBJECTIVES OF THE RESEARCH • To develop an in-depth, detailed understanding of inter-generational family experience of bvFTD over time. • To consider in particular, the emotional experience, the impact on relationships and the strategies families use to make sense of and cope with the changes, such as loss of empathy and theory of mind • To inform the development of interventions for families affected by bvFTD.
METHODS AND METHODOLOGY • Constructivist Grounded Theory and Narrative Thematic Analysis • Longitudinal design involving a narrative, biographical approach to interviewing • 7 families, with 1-5 members taking part, 19 participants in total. • Family members identified by person with bvFTD and their partner or adult child. • Interviews occurred together and/ or separately, • Field work over 14 to 24 months, 46 interviews in total
‘A changing we/ I --- An entrenched we/ I’ • Relational outcomes for; •Close family members including the person with bvFTD •Partners, adult daughters and their partners •For wider family members
• A changing we, stronger in a different way Mollie: Yeah. I find that when we were away in May, on the boat, that Anthony was looking more to me for sort of, instruction. Anthony: Instead of taking the lead I was just... I was the crew and you were the captain… A role reversal. Mollie: We didn't mind, did we, love. As long as we get there. [T3]
• Losing ‘we’ but still connected Kate: I think it’s more like…I tend to be more mothering, yeah more mothering. It’s because we went through like the brother and sister bit, Alistair was still my friend, I could still confide and talk to but because there's no empathy there isn’t that same sharing of jokes, of information and because so much more responsibility is mine now for simple decisions like the car, the fence, all of it tends to be mine, [T3]
• Losing you so losing we, together but separate Sue: I’ll tell you what I do feel, Jenny, I just feel that it would be nice to have a bit of affection, so he’d do something for me and think, ‘Oh that’s nice, Terry, that’s a nice thought,’ or he’d say, ‘We’ll do this.’ It’s always I’ve got to say it… Terry: Yeah, that piece is missing out of the jigsaw puzzle. I can’t help that.
• There is no we, just getting through it Jenny: Mm so how do you think your relationship with your Mum has been affected? Pamela: I haven’t got one. It sounds awful but I don’t want to see her, I don’t want to do anything for her, […][T3]
Implications for person and family centred research and practice • Family centred approaches to working with families living with bvFTD • Assessment of the family relationship history • Developing family centred therapeutic practice in professionals and carers • Ecologically relevant information provision • Interventions to support the person with bvFTD to maintain selfhood, identity and wellbeing • Specific interventions for those family members in close and/ or intimate relationships with the person with bvFTD
Thank you for listening !
[email protected] Acknowledgements Professor J Oyebode, University of Bradford Dr Michael Larkin, University of Aston
