Transgender, Mental Health, and Older People: An Appreciative Approach Towards Working Together.

It cannot be assumed by healthcare providers that transgender people routinely receive care and treatment that is of the quality and sensitivity that should be expected. In particular there are concerns from within the transgender community that they experience discrimination and disrespect from both individual practitioners and the healthcare system as a whole. This causes an avoidance of contact that is undesirable for both users and providers of healthcare services. Older transgender people are vulnerable to a range of mental health problems and, like all elderly, increasingly to dementia; failure to access specialist services in a timely manner may result in unnecessary distress and potentially to crisis. This paper reports on the use of an appreciative inquiry approach towards identifying the opportunities for one health board in North Wales to work more closely with older members of the transgender community it serves.

The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses.

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.

The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation.

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.

Dementia care from behind the mask? Maintaining well-being during COVID-19 pandemic restrictions: Observations from Dementia Care Mapping on NHS mental health hospital wards in Wales.

WHAT IS KNOWN ON THE SUBJECT?: Coronavirus disease 2019 (COVID-19) is a new infectious disease that has spread across the world and infected a large number of people many of whom have died. People with moderate to severe dementia are at very high risk of becoming infected as the disease mainly impacts on older people with other health problems and once infected the person with dementia is more likely to become seriously ill than other people. To prevent infection, people are required to wear masks and isolate from contact with others. It is believed that these measures can reduce the quality of life and general well-being of people with moderate to severe dementia in hospital or social care. This belief has not yet been demonstrated by research. WHAT DOES THIS PAPER ADD TO THE EXISTING KNOWLEDGE?: We show that people with moderate to severe dementia receiving care on mental health hospital wards and subject to strict infection prevention measures can still achieve high levels of well-being. We show that mental health nurses alter the focus of their care to deliberately overcome the challenges and particularly the restrictions on visiting by families. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: We believe that the changes in practice we observed can occur in other healthcare and social care settings and that whilst restrictions remain in place care staff can protect and possibly enhance well-being for people with moderate to severe dementia. ABSTRACT: Introduction The effect of coronavirus (COVID-19) on people living with dementia is potentially severe in its clinical impacts. More widely, for this vulnerable group, the social restrictions to limit the spread of infection may be emotionally and psychologically damaging. Aim To explore the impact of restrictions on well-being for people with moderate to severe dementia in acute mental health hospital care. Method "Dementia Care Mapping" was the observational tool used to determine well- or ill-being. Observations were undertaken in two mental health hospital wards during a time of restrictions and the use of personal protective equipment. Results We report levels of well-being that are higher than might be expected alongside a change in the focus of psychological care delivered through mental health nursing interventions aimed at enhancing well-being. Discussion-We postulate that mental health nurses faced with an unprecedented challenge respond by changing practice to mitigate for infection prevention measures and to compensate for family absence. Implications for practice We suggest that the desirable enhancing actions by nursing staff which raise well-being in these hospital settings are readily transferable to other settings that are aiming to maintain well-being but also practising under COVID-19 restrictions.

Same map, different direction - Exploring new opportunities that dementia care mapping™ can offer to acute mental health admission wards for older people - Innovative practice.

Dementia Care Mapping™ is widely acknowledged as the gold standard observational method that can support the introduction of person centred care into a variety of settings ( http://www.bradford.ac.uk/health/dementia/dementia-care-mapping/ ). It encourages care staff to think about how the person with dementia is experiencing the care provided and the care setting. It has been shown to raise care staff awareness sufficiently to bring about improvements in care. In this paper, we describe a programme of work in North Wales that seeks to find innovative ways to use Dementia Care Mapping™, in acute mental health admission wards for people affected by dementia, and we set out some of those innovations.

Care to talk? A framework for appreciative conversations about dementia: Innovative practice.

When people with dementia are admitted to hospital, both they and their carers and families have crucial roles to play. They should be positioned as the only true experts in the unique individuality of the person and brought into the nursing process as an equal partner in care. 'Care to Talk' is a conversational model developed through Appreciative Inquiry to facilitate this way of working. The model, its development and outcomes are discussed.