Experiences and care needs of LGBTQ+ people affected by dementia: a systematic review; and, An evaluation of the implementation and routine clinical effectiveness of the Newcastle Model for behaviours that challenge in dementia

Abstract

Background Dementia is a syndrome caused by various diseases or injuries that affect the brain. It causes progressive decline in cognitive function resulting in impaired memory, understanding, learning, language and judgement. This is usually accompanied by increasing decline in the individual’s ability to regulate their emotions and behaviour. Systematic review: Current generations of Lesbian, Gay, Bisexual, Transgender and Queer (LGBTQ+) people have lived through marked pathologisation of their minority status. LGBTQ+ people report poorer health outcomes and experience social inequalities that increase modifiable risk factors for developing dementia. They are more likely to require residential care than heterosexual peers as they age. This review sought to identify the experiences and care needs of LGBTQ+ people affected by dementia, and those who care for them, and critically appraise the quality of the current evidence base. Empirical: Behaviours that challenge (BtC) such as physical and verbal aggression are displayed by most people living with dementia (PLwD) to some extent. They are associated with poorer quality of life, caregiver burden, institutionalisation, and distress. The Newcastle Model (TNM) is an intensive formulation driven intervention conceptualising BtC as attempts to meet unmet needs. It posits BtC and distress throughout the system reduce when the PLwD’s unmet needs are identified, understood and addressed. There is an emerging evidence base demonstrating the effectiveness of this approach. This study aimed to a) evaluate the effectiveness of the routine clinical implementation of TNM in two behaviour support services (BSS-A and BSS-B) and b) compare the effectiveness of standard and shortened delivery versions of TNM. Methods: Systematic review: A systematic search of electronic databases was conducted to identify papers that explored the experiences and care needs of LGBTQ+ people affected by dementia. All designs were included. The methodological quality of papers was assessed. Findings were synthesised using narrative synthesis. Empirical paper: Retrospective analysis of routinely collected clinical data from two specialist behaviour support services (BSS-A and BSS-B) that use TNM was conducted. The Cohen Mansfield Agitation Inventory (CMAI), a measure of BtC, was administered at baseline and post-intervention. Mixed two-way ANOVAs were used to analyse the difference within participants CMAI scores pre and post intervention, between behaviour support services, and shortened and standard delivery formats of TNM. Results Systematic review: 24 papers were included. The sources were heterogeneous, and quality of the included papers varied considerably. The evidence synthesis was informed by the highest quality qualitative papers (n=8) and cross checked against other evidence sources. Three themes were identified: ‘Impact of gender and sexual identity on experiences of dementia’; ‘Experiences of navigating health and social care systems’ and ‘Characteristics of culturally competent dementia care’. Empirical Paper: 210 participants were included: 143 in BSS-A and 67 in BSS-B. There was a significant reduction in CMAI scores post intervention (p< .05) in both services, across shortened and standard delivery formats. There was no difference in patient outcome (p>.05) when BSS-A was following the standard TNM protocol (mean delivery duration 23.2 weeks) or the condensed version (mean delivery duration 11.7 weeks). Conclusion Systematic Review: The current evidence base is small and of varying methodological quality. LGBTQ+ people affected by dementia experience unique challenges and have specific care needs that vary within the LGBTQ+ population. Further research is warranted. Empirical Paper: TNM is an effective intervention for reducing BtC in PLwD. The model has ecological validity, demonstrated by two different behaviour support teams outwith that of the TNM developers. A condensed model protocol may promote fidelity to the model and reduce intervention duration whilst maintaining clinical effectiveness.