Delivering systems-level change to improve post-diagnostic dementia support: Qualitative findings from the PriDem study

Copyright: \ua9 2025 Spencer et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Background: There are 900,000 people with dementia in England and Wales. Existing models of post-diagnostic support are unsustainable and unaffordable. The PriDem programme developed a new model of primary care-based dementia care, whereby a Clinical Dementia Lead (CDL) would facilitate systems-level change. Aim: To assess barriers and facilitators to implementation of the PriDem intervention. Methods 7 general practices participated in a qualitative process evaluation, as part of the mixed-methods feasibility and implementation study. Practices were located within 4 Primary Care Networks in the North East and South East of England. 26 healthcare professionals, 14 people with dementia and 16 carers linked to participating general practices participated in semi-structured individual and small group interviews. Additional qualitative data were generated through nonparticipant observations and researcher fieldnotes from CDL intervention supervision sessions. Data were analysed using abductive codebook thematic analysis informed by Normalisation Process Theory (NPT). Results Six themes were generated: 1) The rocky ground of primary care; 2) The power of people; 3) Tension between adaptability and fidelity; 4) Challenging the status quo: reimagining care planning; 5) One size doesn’t fit all; 6) Positive effects on people and systems: towards sustainability. Through the lens of NPT we can understand the contextual challenges facing primary care, the mechanisms (e.g., work undertaken by individuals) to overcome those challenges, as well as the potential outcomes of such an approach, in terms of longer-term sustainability of changes made. Conclusions: Despite the pressures facing primary care within England and Wales, meaningful change can be made to practice in the care of people with dementia. The presence of motivated and engaged staff are critical to implementation, as is ensuring understanding of complex interventions, so that fidelity can be maintained. People with dementia and carers benefitted from improved care systems. Commissioners should consider the benefits of a CDL-led approach

Understanding patients' and significant others' preferences on starting a diagnostic trajectory for dementia: An integrative review

Objective To explore the preferences of people with memory complaints (PwMC) and their significant others regarding starting a diagnostic trajectory for dementia. Methods A systematic literature search was conducted in PubMed, PsycINFO, CINAHL, Web of Science, and Embase. Selection of abstracts and papers was performed independently by two researchers. Methodological quality was assessed with the Mixed Method Appraisal Tool. Result sections of the selected papers were thematically synthesized. Results From 2497 citations, seven qualitative studies and two mixed methods studies published between 2010 and 2020 were included. Overall quality of the studies was high to moderate. A thematic synthesis showed that preferences for starting a diagnostic trajectory arose from the feeling of needing to do something about the symptoms, beliefs on the necessity and expected outcomes of starting a diagnostic trajectory. These views were influenced by normalization or validation of symptoms, the support or wishes of the social network, interactions with health care professionals, the health status of the PwMC, and societal factors such as stigma and socioeconomic status. Conclusion A variety of considerations with regard to decision-making on starting a diagnostic trajectory for dementia were identified. This emphasizes the need to explore individual preferences to facilitate a timely dementia diagnosis

The Utility of Researcher-Driven Projective and Enabling Techniques to Support Engagement in Research About Dementia Diagnosis and Post-Diagnostic Support

Research involving people with dementia has highlighted the need to improve engagement in the conduct of interviews and focus groups. Projective and enabling techniques may be useful and avoid some of the drawbacks associated with direct questioning. However, researcher-driven projective techniques have not been extensively tested in research with people with dementia. In 2019, researchers in Australia, Canada, the Netherlands and Poland received training and trialled projective and enabling techniques to collect data about dementia diagnostic and early post-diagnostic experiences. The techniques were used with a total of thirty people with dementia (aged 67-97 years) in online and face-to-face individual and dyadic interviews and a focus group. Word association activities supported brainstorming about the concepts of 'dementia' and 'support'. A researcher-driven photo elicitation technique was utilised to seek responses concerning a hypothetical couple at four time points: during a diagnostic conversation, and at 1, 6 and 12-month post-diagnosis. Discussions were audio recorded and transcribed and interviewers created 'meta' mind maps of word associations and made reflective notes regarding participant engagement. Deductive content analysis was used to assess the value of the techniques to support a manageable, comprehensible and meaningful research experience. Word associations supported free-flowing conversations around the key research concepts. Photo elicitation techniques promoted empathy and supported personal reflections on the probable experiences and needs of the hypothetical couple. The techniques were also useful in eliciting reflections on personal experiences, societal responses to dementia, and recommendations for improving the diagnostic conversation and supports for the post-diagnostic period. Overall, the techniques appeared to lessen some of the demands of direct questioning but were not manageable or meaningful for all participants. Further research should explore the vast array of projective techniques and engage in greater co-design and tailoring of research approaches to enhance the toolkit of dementia researchers

The Utility of Researcher-Driven Projective and Enabling Techniques to Support Engagement in Research About Dementia Diagnosis and Post-Diagnostic Support

Research involving people with dementia has highlighted the need to improve engagement in the conduct of interviews and focus groups. Projective and enabling techniques may be useful and avoid some of the drawbacks associated with direct questioning. However, researcher-driven projective techniques have not been extensively tested in research with people with dementia. In 2019, researchers in Australia, Canada, the Netherlands and Poland received training and trialled projective and enabling techniques to collect data about dementia diagnostic and early post-diagnostic experiences. The techniques were used with a total of thirty people with dementia (aged 67–97 years) in online and face-to-face individual and dyadic interviews and a focus group. Word association activities supported brainstorming about the concepts of ‘dementia’ and ‘support’. A researcher-driven photo elicitation technique was utilised to seek responses concerning a hypothetical couple at four time points: during a diagnostic conversation, and at 1, 6 and 12-month post-diagnosis. Discussions were audio recorded and transcribed and interviewers created ‘meta’ mind maps of word associations and made reflective notes regarding participant engagement. Deductive content analysis was used to assess the value of the techniques to support a manageable, comprehensible and meaningful research experience. Word associations supported free-flowing conversations around the key research concepts. Photo elicitation techniques promoted empathy and supported personal reflections on the probable experiences and needs of the hypothetical couple. The techniques were also useful in eliciting reflections on personal experiences, societal responses to dementia, and recommendations for improving the diagnostic conversation and supports for the post-diagnostic period. Overall, the techniques appeared to lessen some of the demands of direct questioning but were not manageable or meaningful for all participants. Further research should explore the vast array of projective techniques and engage in greater co-design and tailoring of research approaches to enhance the toolkit of dementia researchers

The Utility of Researcher-Driven Projective and Enabling Techniques to Support Engagement in Research About Dementia Diagnosis and Post-Diagnostic Support

Research involving people with dementia has highlighted the need to improve engagement in the conduct of interviews and focus groups. Projective and enabling techniques may be useful and avoid some of the drawbacks associated with direct questioning. However, researcher-driven projective techniques have not been extensively tested in research with people with dementia. In 2019, researchers in Australia, Canada, the Netherlands and Poland received training and trialled projective and enabling techniques to collect data about dementia diagnostic and early post-diagnostic experiences. The techniques were used with a total of thirty people with dementia (aged 67–97 years) in online and face-to-face individual and dyadic interviews and a focus group. Word association activities supported brainstorming about the concepts of ‘dementia’ and ‘support’. A researcher-driven photo elicitation technique was utilised to seek responses concerning a hypothetical couple at four time points: during a diagnostic conversation, and at 1, 6 and 12-month post-diagnosis. Discussions were audio recorded and transcribed and interviewers created ‘meta’ mind maps of word associations and made reflective notes regarding participant engagement. Deductive content analysis was used to assess the value of the techniques to support a manageable, comprehensible and meaningful research experience. Word associations supported free-flowing conversations around the key research concepts. Photo elicitation techniques promoted empathy and supported personal reflections on the probable experiences and needs of the hypothetical couple. The techniques were also useful in eliciting reflections on personal experiences, societal responses to dementia, and recommendations for improving the diagnostic conversation and supports for the post-diagnostic period. Overall, the techniques appeared to lessen some of the demands of direct questioning but were not manageable or meaningful for all participants. Further research should explore the vast array of projective techniques and engage in greater co-design and tailoring of research approaches to enhance the toolkit of dementia researchers

Supplemental Material - The Utility of Researcher-Driven Projective and Enabling Techniques to Support Engagement in Research About Dementia Diagnosis and Post-Diagnostic Support

Supplemental Material for The Utility of Researcher-Driven Projective and Enabling Techniques to Support Engagement in Research About Dementia Diagnosis and Post-Diagnostic Support by Phillipson, L., Hevink, M., Conway, E., Gresham, M., McAiney, C., Mackowiak, M., Szczesniak, D., Smith, L., Brodaty, H. and Low, L. F. in International Journal of Qualitative Methods.</p

Exploring perceived helpfulness of health services in men and women with dementia and care partners: A cross-sectional analysis

\ua9 The Author(s) 2024.Introduction: The aim of this study was to examine the association of sex/gender and other factors with the perceived helpfulness of the diagnostic process and post-diagnostic services by persons with dementia and care partners. Methods: We conducted secondary cross-sectional analysis of surveys from the ‘Cognisance’ project. Sex/gender and other factors (e.g., demographic variables, help seeking behaviours, healthcare professional consulted) of persons with dementia and care partners from four countries were considered. Main outcomes were perceived helpfulness of diagnostic process and post-diagnostic services. We conducted descriptive and multivariate analyses. Results: Compared to men, more women with dementia perceived post-diagnostic services as helpful though not statistically significant. Sex/gender was not associated with perceived helpfulness of diagnostic process and post-diagnostic services among care partners. Satisfaction with and awareness of services were associated with perceived helpfulness among care partners. Discussion: These findings underscore the necessity for sex/gender-based research to enhance dementia care and for tailored interventions

Delivering systems-level change to improve post-diagnostic dementia support: qualitative findings from the PriDem study

BackgroundThere are 900,000 people with dementia in England and Wales. Existing models of post-diagnostic support are unsustainable and unaffordable. The PriDem programme developed a new model of primary care-based dementia care, whereby a Clinical Dementia Lead (CDL) would facilitate systems-level change.AimTo assess barriers and facilitators to implementation of the PriDem intervention.Methods7 general practices participated in a qualitative process evaluation, as part of the mixed-methods feasibility and implementation study. Practices were located within 4 Primary Care Networks in the North East and South East of England. 26 healthcare professionals, 14 people with dementia and 16 carers linked to participating general practices participated in semi-structured individual and small group interviews. Additional qualitative data were generated through nonparticipant observations and researcher fieldnotes from CDL intervention supervision sessions. Data were analysed using abductive codebook thematic analysis informed by Normalisation Process Theory (NPT).ResultsSix themes were generated: 1) The rocky ground of primary care; 2) The power of people; 3) Tension between adaptability and fidelity; 4) Challenging the status quo: reimagining care planning; 5) One size doesn’t fit all; 6) Positive effects on people and systems: towards sustainability. Through the lens of NPT we can understand the contextual challenges facing primary care, the mechanisms (e.g., work undertaken by individuals) to overcome those challenges, as well as the potential outcomes of such an approach, in terms of longer-term sustainability of changes made.ConclusionsDespite the pressures facing primary care within England and Wales, meaningful change can be made to practice in the care of people with dementia. The presence of motivated and engaged staff are critical to implementation, as is ensuring understanding of complex interventions, so that fidelity can be maintained. People with dementia and carers benefitted from improved care systems. Commissioners should consider the benefits of a CDL-led approach.</p