The pathways for receiving a diagnosis of a rare type of dementia are poorly understood. Diagnostic challenges decrease access to relevant health promotion activities and post-diagnostic support. This study was focused on pathways experienced by people affected by rare dementia in Wales, United Kingdom (UK), considering the practical, emotional, and economic consequences. Semi-structured interviews were completed with 10 people affected by rare dementia across Wales, UK (nine family caregivers and one person living with rare dementia). The interview data were subject to a thematic analysis and a bottom-up costing approach was used to cost the pathway journeys. Five transitional points occurred across the diagnostic pathway (initial contact, initial referral, further referrals—provider, further referrals—private, and diagnosis) alongside two further themes (i.e., involved in the diagnostic process and disputes between stakeholders). The timeliness of the diagnosis was perceived to often be subject to ‘luck’, with access to private healthcare a personal finance option to expedite the process. Higher economic costs were observed when, in retrospect, inappropriate referrals were made, or multiple referrals were required. The confusion and disputes relating to individual diagnostic pathways led to further emotional burdens, suggesting that higher economic costs and emotional consequences are interlinked. Clearer diagnostic pathways for rare dementia may prevent unnecessary service contacts, waiting times, and associated distress. Prioritising appropriate and timely service contacts leads to diagnosis and support to families and enables people to increase control over their health. Appropriate diagnostic pathways may be less costly and reduce costs for families.

Background: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. Objective: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. Methods: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. Results: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. Conclusions: The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population. International Registered Report Identifier (IRRID): DERR1-10.2196/35376

Purpose: This paper aims to understand the lived experience of a person living with dementia in a care home during the COVID-19 pandemic. It responds to the absence in research of the voices of people with dementia living in care homes during the pandemic. Design/methodology/approach: The paper adopts a single case study design applied thematic analysis to semi-structured interview data to discover the experiences of one person living with dementia in a care home during a period of lockdown. Findings: Five themes reveal how the participant responded to the practical and emotional challenges of the pandemic: autonomy; fears; keeping connected; keeping safe and other people living with dementia. These themes highlight the participant’s ability to adapt, accept and dispute lockdown restrictions, revealing considerable insight into their situation. Research limitations/implications: The pandemic has restricted access to care homes, which informed the single case study design. This approach to the research may restrict the generalisability of the findings. Other researchers are encouraged to include the voices of people with dementia living in care homes in further studies. Practical implications: Implications for practice, presented in this paper, promote quality psychosocial approaches when health-care workers engage with people living with dementia during periods of restricted activity. Originality/value: Unlike other studies about the impact of the pandemic on care homes, this paper explores the experience of the pandemic in care homes from the perspective of a person living with dementia.

Introduction: Stigmatising language concerning people living with dementia can cause potentially harmful and dehumanising consequences. Language used about people living with dementia in mental health wards may focus on medical perspectives and suggest custodial relationships with patients rather than person-centred accounts of individuals. This language could have a devastating impact on the provision of person-centred care. This study investigated the relationship between accounts of people living with dementia written in healthcare case notes and clinical practice at three dementia specialist wards in Wales, UK. Language guidance was provided to ward staff to assess whether stigmatising language could be reduced and whether this influenced the provision of person-centred care. Methodology: Dementia Care Mapping was adapted to analyse case note entries for enhancing and detracting accounts of people living with dementia at three data collection points. These were compared to the results of routine DCM observations of care across the three wards. The healthcare case notes of 117 people living with dementia, encompassing 4, 522 entries over ten months were analysed. DCM observations of 38 people living with dementia within the three wards were compared against the case note results. Person-centred language guidance was shared with care staff following each data collection point. Results: Following the provision of person-centered language guidance, the use of personally enhancing language was observed to increase across all three wards. Non-person-centred case note entries predominantly focussed on Labelling language, whilst language concerning Invalidation and Objectification also occurred frequently compared to other DCM domains. Person centred language typically concerned Acknowledgement. A relationship between case note entries and practice was evident in some domains although findings were inconsistent. Discussion and Implications: The findings highlight the importance of addressing stigmatising language in healthcare and suggest that further studies to support the anti-stigma agenda in dementia care are required.