A longitudinal exploration of the experience of frontotemporal dementia in intergenerational families.

Abstract

Where a person is diagnosed and lives with behavioural variant fronto-temporal dementia (bvFTD) families experience particular challenges associated with changes in personality, social behaviour and loss of empathy. Limited research exists which explores the interplay between family relationships and less common forms of dementia such as bvFTD. Existing research is primarily quantitative but suffers from methodological challenges including small sample sizes. Such research has also limited itself primarily to comparing the differences experienced in regard to behaviour change between caregiving for a person with Alzheimer’s disease and a person with FTD. Furthermore, this and other research in the field of dementia care focuses primarily on the dyadic relationship between the person with dementia and their primary family caregiver (usually a spouse), in spite of evidence suggesting that dementia impacts upon whole family systems across generations.

I am currently undertaking a doctoral research study, which seeks to develop an in-depth, rich description of the intergenerational family experience of bvFTD over time. The research focuses upon the emotional experience and the strategies that such families, including the person with FTD, use to make sense of and cope with the impact of the changes that occur. The results of this research will be used to inform the development of interventions for families experiencing these forms of dementia.

This funding facilitated the 4th year of my studies, during which I undertook a further 16 interviews with family members from 7 separate families living with bvFTD.  I have now completed my data collection. I have further developed and reviewed the methodology associated with the research, and reflected upon the ethical challenges of this type of research for people living with bvFTD, their family members and for myself as a researcher and practitioner. This has included recognising the value in using two methodological approaches to analysis, narrative analysis and modified grounded theory. During this year I have also moved into a clinical and service development role, which has afforded me the opportunity to directly influence practice with people living with bvFTD and their families, through education, consultation and service development. I have recently co-authored an article which will be published in a professional journal, the Journal of Dementia Care, on Living with bvFTD and a further article is currently in preparation on working with families living with bvFTD with the same journal. Our goal in submitting these articles is to increase understanding of bvFTD among practitioners.

Recommendations from this year of study include;

1. The need to enhance opportunities for nurses and other professionals to be research active. While combining the role of researcher with practitioner holds particular challenges, it also has the potential to provide significant benefits to our clinical practice including enhancing critical analysis, assisting in the design, delivery and evaluation of clinical interventions and bringing new knowledge into clinical practice. Given the significant concerns being expressed about nursing practice in light of recent reports and inquiries (c.f. Francis, Report of the Mid-Staffordshire NHS Foundation Trust, Public Inquiry, 2013), research active nurses have the potential support the recommendations for nursing, including transparency and openness, quality of care delivery and compassionate care.
2. Research and interventions with people living with bvFTD need to take into account the very different impact of the cognitive and relational changes associated with the illness on our practice.
3. Ethical practice in dementia research also needs to consider how ‘in the moment’ challenges can be appropriately responded to. This has rarely been addressed in literature to date, but would benefit from considering such strategies as ethical mindfulness, and consideration of checklists for ethical mindfulness and reflexivity described by Warin (2011) and Bowtell et al. (2013). These considerations will need to include how imbalances in power can be addressed by the researcher.
4. Consistent with the recognition that integrative approaches are of value in clinical practice, an emerging concept in qualitative research is considering the integration of different methodological approaches which enhance opportunities for discovery of new knowledge. Such approaches have considerable potential to offer multidimensional understandings, but should give due regard to theoretical integrity, research design and the rationale for combining methods (Lal, et al. 2012, Floersch, et al. 2010).