“She’s my memory; he’s my legs!” Couples’ experiences of living with dementia and multiple health conditions

Background: Dementia rarely travels alone. It is the norm, rather than the exception, that people living with dementia also live with multiple additional health conditions. In addition, spousal carers, who make up nearly two thirds of all carers of people with dementia, are also likely to be living with multiple health conditions, given that increased age is strongly associated with an increased prevalence of health conditions. Therefore, living with dementia alongside multiple health conditions is a shared experience for couples. However, research has predominantly focussed on epidemiological studies or how people access healthcare services; no studies have explored the lived experiences of couples living with dementia and multiple health conditions and sought to understand their needs.Aim: To explore and understand the experiences of couples living with both dementia and multiple health conditions, from a dyadic perspective.Method: Three investigations were conducted to address the research aim: two literature reviews and one empirical study. First, a scoping review to understand how the terms ‘comorbidity’ and ‘multimorbidity’ are conceptualised in relation to people living with dementia was conducted. The findings from the scoping review were used to inform the methodological approach for the second and third studies. Second, given the significant lack of research in this area, a systematic, qualitative evidence review was conducted to explore in what way (if any) living with dementia and multiple health conditions may impact on couplehood (or vice versa). Third, an empirical, multi-modal, qualitative research design using a combination of photo diaries and semi-structured interviews was employed to collect the experiences of couples living with dementia and multiple health conditions. The photos taken by participants were used as a photo-elicitation technique within the couple’s audio-recorded interviews, and the transcribed interviews were analysed using Interpretative Phenomenological Analysis (IPA). Consultation with a Patient and Public Involvement group and a pilot interview were undertaken to make improvements to the research study and ensure the design was feasible and ethical.Findings: The results from the scoping review highlight that current definitions of comorbidity and multimorbidity are heterogeneous, reductionist and disease-focussed, and fail to accurately reflect the health and wellbeing of people with dementia. A Syndemic Framework of Health in Dementia was developed in order to provide a more holistic way of conceptualising ‘multiple health conditions’ in people with dementia. The qualitative evidence review (informed by the Syndemic Framework) did not reveal any published qualitative research on the experiences of couples living with both dementia and multiple health conditions and how this is linked with perceptions of couplehood. Therefore, the review focussed on a meta-ethnographic synthesis of couples’ experiences of living with dementia and their couplehood, which found that couplehood was threatened when dementia symptoms progressed, and couples experienced feelings of loss of independence and identity. However, a strong foundation of commitment, love and loyalty to each other developed over the course of the relationship, was the ‘glue’ that helped couples face dementia together. The findings also indicated that dementia had an impact on emotional health and wellbeing, and that other physical health problems (not dementia) impacted on a physical sexual relationship. In order to explore the experiences of couples living with dementia and multiple health conditions, six married, heterosexual couples participated in an empirical, qualitative study, which the qualitative evidence review revealed had not been researched before. Couples did not prioritise one health condition over another. Symptoms that were experienced as tangible, acute, uncontrollable and resulted in unnatural feelings in the body were most problematised. For some, the combination of dementia and multiple health conditions led to a lost sense of self and disembodiment. Consequently, some couples experienced emotional distress due to a lost sense of self and independence, which impacted on couple identity, and created tensions and frustrations in their relationship. Other couples, however, did not report significant distress and approached their dementia and multiple health conditions with acceptance, stoicism, gratitude and a positive outlook. Despite their health challenges, all six couples felt they had become closer to each other because of their dementia and multiple health conditions and found ways to adapt and normalise everyday life, preserving their couple identity.Conclusion: Current definitions of comorbidity and multimorbidity vary considerably and often focus on index diseases, rather than considering broader components of health issues such as sensory impairments or mental health, issues often common in people with dementia. A Syndemic Framework, rather than a one-off definition, could be a useful tool for researchers, clinicians and policy makers to consider a more holistic picture of a person with dementia's health and wellbeing in the context of multiple health conditions. A qualitative evidence review did not reveal any papers on couplehood, dementia and multiple health conditions. The empirical, qualitative research in this PhD is the first study to address this gap in knowledge, which found that couples varied in their ability to adjust and cope with living with dementia and multiple health conditions. All couples experienced the complex, fluctuating symptoms of their various health conditions, which were hard to disentangle, and required couples to adapt and work together. However, the health and social care system in the UK continues to be dominated by biomedical, dualistic models of care, where health conditions are treated in isolation. A relationship-centred, integrated care model, underpinned by the Syndemic Framework of Health in Dementia, is needed to provide holistic, multi and interdisciplinary support to older couples living with dementia and multiple health conditions.