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

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. Using narrative analysis and biographical interviewing, 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 3rd year of my studies, during which I undertook 30 interviews with family members from 7 separate families living with bvFTD.  I also further developed and reviewed the methodology associated with the research, refined my analytical approach and reflected upon the challenges of this type of research. This resulted in 3 separate presentations on my methodology which have also reflected upon the complexities of carrying out research with families. I also developed and successfully submitted a symposium proposal for the 2013 UK Dementia Congress, exploring practice implications of research considering the impact and experience of frontotemporal dementias.

During this academic year the systematic synthesis which was written in the previous academic year, was submitted and following revisions, was accepted by Ageing and Society for publication http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=8869603 . The synthesis was subsequently included in a special online collection of articles concerning dementia by Ageing and Society http://journals.cambridge.org/action/displaySpecialArticle?jid=ASO&bespokeId=6300.

This year of study has highlighted a number of recommendations for research in this area, and practice including:

• Recruitment strategies for engaging multiple family members in research need to recognise the many factors that might impact upon their willingness to take part. Furthermore, it will be necessary to address the implications that interviewing multiple family members will have for the analytical strategy, and the ontological position informing this analysis.
• Equally, working with families in practice in order to address the challenges of living with dementia needs to acknowledge diverse views that may be present in families and the dynamics that may underpin these perspectives. This also includes the need to understand family members’ previous experience of services, which may be a significant factor influencing meaningful engagement.
• Many families continue to experience difficulties in their engagement with services, including the extent to which they feel that their perspectives are recognised and included when planning care. Professionals including nurses therefore need to give thought to how meaningful relationships between themselves, people with dementia and their family members can be achieved.
• When engaging in qualitative interviewing, researchers need to consider how they can best utilise data concerning the context, form and non-verbal interactions that occur. While issues of transparency need to be addressed, taking account of such data can only serve to enrich our awareness and understanding. This is particularly important when doing research with people with difficulties with communication.
• When carrying out research of this kind, it is important to engage in ongoing reflection and consider whether the proposed methodology and method actually works in practice and responds to the demands and challenges of the context. Thus researchers should be prepared to further refine these to ensure that they enable us to achieve the research goals.
• While there is considerable value in interviewing families together, in terms of the richness of data and the opportunity to experience life as it is lived, it is nevertheless important to acknowledge that this may not be possible or desired by family members. Families need to be given choice about the manner of their participation. Whichever choice they make, the complexity of such research requires that safeguards are put in place to ensure that the family are able to stop if they wish to and that space is offered to debrief when the interview is at an end.
• The practitioner/ researcher role is a complex one, and carrying out research challenges us to remain focused and centred in our role as researcher. Nevertheless, our guiding professional standards also inform this role, and require that we ensure that families are adequately supported by the provision of information and/ or signposting as appropriate to their expressed needs.
• Consideration needs to be given to how person and family centred care can be applied in the context of frontotemporal dementia, and professionals need to be supported to deliver this effectively.