Remote versus face-to-face neuropsychological testing for dementia research: a comparative study in people with Alzheimer's disease, frontotemporal dementia and healthy older individuals.

OBJECTIVES: We explored whether adapting neuropsychological tests for online administration during the COVID-19 pandemic was feasible for dementia research. DESIGN: We used a longitudinal design for healthy controls, who completed face-to-face assessments 3-4 years before remote assessments. For patients, we used a cross-sectional design, contrasting a prospective remote cohort with a retrospective face-to-face cohort matched for age/education/severity. SETTING: Remote assessments were conducted using video-conferencing/online testing platforms, with participants using a personal computer/tablet at home. Face-to-face assessments were conducted in testing rooms at our research centre. PARTICIPANTS: The remote cohort comprised 25 patients (n=8 Alzheimer's disease (AD); n=3 behavioural variant frontotemporal dementia (bvFTD); n=4 semantic dementia (SD); n=5 progressive non-fluent aphasia (PNFA); n=5 logopenic aphasia (LPA)). The face-to-face patient cohort comprised 64 patients (n=25 AD; n=12 bvFTD; n=9 SD; n=12 PNFA; n=6 LPA). Ten controls who previously participated in face-to-face research also took part remotely. OUTCOME MEASURES: The outcome measures comprised the strength of evidence under a Bayesian framework for differences in performances between testing environments on general neuropsychological and neurolinguistic measures. RESULTS: There was substantial evidence suggesting no difference across environments in both the healthy control and combined patient cohorts (including measures of working memory, single-word comprehension, arithmetic and naming; Bayes Factors (BF)01 >3), in the healthy control group alone (including measures of letter/category fluency, semantic knowledge and bisyllabic word repetition; all BF01 >3), and in the combined patient cohort alone (including measures of working memory, episodic memory, short-term verbal memory, visual perception, non-word reading, sentence comprehension and bisyllabic/trisyllabic word repetition; all BF01 >3). In the control cohort alone, there was substantial evidence in support of a difference across environments for tests of visual perception (BF01=0.0404) and monosyllabic word repetition (BF01=0.0487). CONCLUSIONS: Our findings suggest that remote delivery of neuropsychological tests for dementia research is feasible.

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.

Communication during Covid-19: Use of video conferencing technology by people living with dementia

Background The use of videoconferencing technology has increased as an alternative communication method for people to retain social and clinical contact during Covid-19 restrictions. This study investigated the uptake, limitations and benefits of videoconferencing for people living with dementia (PLWD). Method Twenty-three PLWD, 87 caregivers (on behalf of PLWD) and 39 healthy control participants anonymously reported their experiences of using videoconferencing technology during the Covid-19 pandemic (PLWD: 38-90 years;controls: 32-100 years). The online survey ran between December 2020 and April 2021. Respondents represented experiences of people living with Alzheimer?s Disease (AD;27), Frontotemporal Dementia (FTD;23), Primary Progressive Aphasia (PPA;24), Posterior Cortical Atrophy (PCA;22), Lewy Body Dementia (LDB;7). Mann-Whitney U tests were used to compare Likert ratings of videoconferencing experiences between PLWD or diagnostic subgroups and controls. Result The majority of survey respondents that use videoconferencing technology reported an increased usage during the Covid-19 pandemic than before (85%). However, 28% of PLWD did not use videoconferencing at all, compared to 3% of healthy controls. Only 53% of PLWD reported they liked using videoconferencing technology compared to 67% of controls, and this was lowest for people with LBD (33%) or PCA (40%). Interestingly, 64% of people with FTD liked videoconferencing and rated it more engaging than traditional telephone calls compared to healthy controls (p=0.045). People with AD, PCA and FTD found online meetings with multiple people more difficult than controls (p=0.036;p<0.001;p=0.030). Qualitative responses to questions on telemedicine were mixed, with PLWD three times more likely to report overall negative consequences (e.g. ?communication better face-to-face?) than positive benefits (e.g. ?less tiring?) for cognitive clinic and dementia-related GP appointments, compared to face-to-face visits. Conclusion The use of videoconferencing by PLWD and healthy controls has increased during the Covid-19 pandemic. However, a significant proportion of PLWD surveyed are not able to use these technologies, with different profiles of uptake and enthusiasm across dementia subtypes. Our findings suggest that whilst representing a helpful alternative to face-to-face communication during the pandemic, videoconferencing (particularly in clinical settings) may be a significant barrier to communication for some people with cognitive impairment.

Communication during Covid-19: Impacts of face coverings on people living with dementia

Background The compulsory introduction of wearing face coverings and social distancing to curb the spread of Covid-19 in the United Kingdom has reduced both the quality of auditory information and availability of visual and non-verbal cues during conversations with others. This is likely to have a greater impact on efficiency and effectiveness of communication for people living with dementia and particularly those with a language-led dementia: Primary Progressive Aphasia (PPA). Method Twenty-four people living with dementia (PLWD), 95 caregivers (on behalf of PLWD) and 38 healthy older controls anonymously reported their experiences of wearing face coverings and the associated impacts on communication via an online survey that ran between December 2020 and April 2021 (age ranges: PLWD 38-90 years;controls 32-100 years). The majority of questions were self-reflective experiences compared to when not wearing face coverings. Mann-Whitney U tests were used to compare Likert ratings for impact of wearing face coverings on aspects of speaking, listening and holding conversations between PLWD or diagnosis subgroups (27 PPA;26 Frontotemporal Dementia, FTD;29 Alzheimer?s disease, AD;24 Posterior Cortical Atrophy, PCA) and the controls. Result Wearing a face covering made both speaking (80%) and listening (90%) more effortful for the majority of survey respondents and had a greater impact on people living with PPA. Overall PLWD were more likely to require help communicating and those with PPA relied more on non-verbal strategies (e.g. body language or gestures) than when not wearing a face covering, compared to controls (p=0.001) and other diagnosis subgroups. People with PPA also experienced greater difficulty understanding across diverse everyday listening conditions and most aspects of conversation than controls (p<0.05). People with PCA (p=0.039) also had more difficulty knowing when it was their turn to speak and those with FTD had more difficulty speaking over others (p=0.032), compared to controls. The use of face coverings during the Covid-19 pandemic also prevented more PLWD from taking part in activities than controls. Conclusion PLWD, and in particular those with a diagnosis of PPA, are particularly susceptible to the negative impacts of the use of face coverings on communication.