ABSTRACT
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.
ABSTRACT
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.