The social understanding of mental health crisis in dementia

Introduction: Dementia is a neurodegenerative and psychosocial condition, affecting cognition and leading to experiences of crisis that can prove destabilising for the person with dementia and their family carers. In the UK, the Prime Minister’s Challenge on Dementia 2020 calls for post diagnosis secondary support for crisis care as key to reduce hospital admissions, care burden and maintain the person with dementia in a familiar environment. Although at community level, crises are managed through multidisciplinary teams, the provision of these teams is not consistent across the care sector, as different teams may have different structure and provide different therapeutic options for resolution of crisis. Research on the experience of crisis care is still limited. For this reason, the study aims to explore (i) the experience of managing crises in dyads, people with dementia and their carers, and (ii) the way the person with dementia is actively involved by teams managing crisis in dementia when delivering professional support. Owing to the variety of experiences and triggers that crises may entail, crises were operationalised in more general terms and according to mechanisms underlying the behavioural process. A Crisis was defined as ‘a process in which a stressor(s) causes an imbalance that requires immediate decision to reach a crisis resolution. In the presence of an unresolved crisis, the cycle continues. Methods: The study employed a two-phase process for knowledge acquisition and generation. The first phase comprised four systematic reviews around the social dimension of dementia: 1) How dementia has been conceived of through history and the power held by the person with dementia to change societal views around the condition, 2) the role of the carer in promoting a positive care environment and ways in which decisional power in the person with dementia is fostered, 3) the key factors determining the degree of involvement of the people with dementia in their own care, and 4) how the members of the dyad construct their own experience of crisis in dementia. These first lines of inquiry informed the interview topics for the empirical phase of the study exploring the experiences of crisis and decisional power. Longitudinal qualitative interviews were held with dyads living in the community, to explore how they coped with episodes of crises and their overall experience of receiving care from multidisciplinary teams managing crisis in dementia. Two co-researchers with lived experience of dementia were trained in qualitative interviews and helped deliver the dyadic interviews. Dyadic interviews were first analysed through thematic analysis and then data were further analysed through narrative inquiry to create a storyline across cases. Focus groups were held with staff members of teams managing crisis in dementia and family carers to explore how co-production, defined here as active participation, could be promoted in the delivery of care. Framework analysis was used for focus group interviews. For all interviews, a codebook was created to facilitate data coding. Two raters coded 10% of interviews and inter-rater reliability was measured through Cohen’s Kappa (k). Disagreement was resolved through consensus. Results: Findings from the systematic review on the historical construction of dementia pointed to the association of dementia with ageing, to confusing statements about capacity both in older people and in people with dementia, and the consequent assumption that people in old age acquire dementia and lose capacity. The systematic reviews on agency and on the dyadic construction of dementia added to our knowledge of how, in dementia care, the concept of capacity is often conceived of as either present or absent, with no appreciation of degrees of ability. This could lead people with dementia to have their views only partially considered because they appear to be less able to make decisions. The review on personhood and dignity further highlighted the role of ‘others’, the carer and health professionals, in determining the degree of decisional power exerted by the person with dementia. Problems in the promotion of decisional power were reported during the dyadic interviews. A total of 16 dyadic interviews were conducted with five dyads on mental health crisis. What was found was that the experience of crisis made the member of the dyad feel disoriented about how to best manage the episode, the carer often retained responsibility to make decisions with very few options and little information at hand. This not only increased the perceived level of responsibility of the carer, with possible added care burden, but it also decreased the decisional power exerted by the person with dementia who was regarded as unable to make decisions with respect to managing the crisis episode. Decisional power was often withheld by professionals who had limited knowledge and or experience of the condition. This tended to divest the person with dementia of their right to practise agency. When adequate information was not provided around the role of the teams and best timing to call for help for crisis, there was the consequent risk to delay the call for professional help. With respected to the interviews around co-production, three focus groups were run with a total of 22 staff members and two focus groups with a total of three family carers. Staff reported that strategies which were deployed included caring for the carer, talking to the person with dementia on a one to one basis if the carer tended to over decide for the person they cared for, and promoting proxy decision making when necessary. Carers reported that acknowledging what the person can and cannot do is key to promoting co-production. If this is not made in accordance with the level of capacity of the person, there is the risk of disempowerment and having their views not adequately considered. Conclusion: Analysis of mental health crises in dementia was approached from multiple perspectives, using primary and secondary data. With co-production as an aim, these results have implications for service organisation and delivery. People with dementia and their carers need to be fully informed about the overall experience of crises and about the professional support to which they are entitled before a crisis occurs. Staff members need to increase awareness of the ‘grey areas’ of mental capacity in dementia. Strategies and mechanisms for actively involving people with dementia and carers in health care planning need greater attention and development