Improving Conversations about Parkinson's Dementia.

BACKGROUND: People with Parkinson's disease (PD) have an increased risk of dementia, yet patients and clinicians frequently avoid talking about it due to associated stigma, and the perception that "nothing can be done about it". However, open conversations about PD dementia may allow people with the condition to access treatment and support, and may increase participation in research aimed at understanding PD dementia. OBJECTIVES: To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia. METHODS: We worked with people with PD, engagement experts, artists, and a PD charity to open up these conversations. 34 participants (16 PD; 6 PD dementia; 1 Parkinsonism, 11 caregivers) attended creative workshops to examine fears about PD dementia and develop information resources. 25 PD experts contributed to the resources. RESULTS: While most people with PD (70%) and caregivers (81%) shared worries about cognitive changes prior to the workshops, only 38% and 30%, respectively, had raised these concerns with a healthcare professional. 91% of people with PD and 73% of caregivers agreed that PD clinicians should ask about cognitive changes routinely through direct questions and perform cognitive tests at clinic appointments. We used insights from the creative workshops, and input from a network of PD experts to co-develop two open-access resources: one for people with PD and their families, and one for healthcare professionals. CONCLUSION: Using artistic and creative workshops, co-learning and striving for diverse voices, we co-produced relevant resources for a wider audience to improve conversations about PD dementia.

Connected speech features in non-English speakers with Alzheimer's disease: protocol for scoping review.

BACKGROUND: A large body of literature indicates that connected speech profiles in patients with Alzheimer's disease (AD) can be utilized for diagnosis, disease monitoring, and for developing communication strategies for patients. Most connected speech research has been conducted in English, with little work in some European languages. Therefore, significant drawback remains with respect to the diversity of languages studied, and how the fragmentation of linguistic features differs across languages in AD. Accordingly, existing reviews on connected speech in AD have focused on findings from English-speaking patients; none have specifically focused on the linguistic diversity of AD populations. This scoping review is undertaken to provide the currently reported characteristics of connected speech in AD in languages other than English. It also seeks to identify the type of assessments, methods to elicit speech samples, type of analysis and linguistic frameworks used, and micro- and macro-linguistic features of speech reported in non-English speakers with AD. METHOD: We will conduct a scoping review of published studies that have quantitively assessed connected speech in AD in languages other than English. The inclusion criteria for the studies would be subject/s with a clinical diagnosis of AD. The search will include the electronic databases PubMed, Ovid-Embase, PsycINFO, Linguistic and Language Behaviour Abstracts (LLBA), and Web of Science up until March 2023. Findings will be mapped and described according to the languages studied, the methodology employed (e.g., patient characteristics, tasks used, linguistic analysis framework utilized), and connected speech profiles derived (e.g., micro- and macro-linguistic reported). DISCUSSION: The scoping review will provide an overview of languages studied in connected speech research in AD with variation in linguistic features across languages, thus allowing comparison with the established key features that distinguish AD patients from healthy controls. The findings will inform future research in connected speech in different languages to facilitate robust connected speech research in linguistically and ethnically diverse populations.

Pupil responses to colorfulness are selectively reduced in healthy older adults.

The alignment between visual pathway signaling and pupil dynamics offers a promising non-invasive method to further illuminate the mechanisms of human color perception. However, only limited research has been done in this area and the effects of healthy aging on pupil responses to the different color components have not been studied yet. Here we aim to address this by modelling the effects of color lightness and chroma (colorfulness) on pupil responses in young and older adults, in a closely controlled passive viewing experiment with 26 broad-spectrum digital color fields. We show that pupil responses to color lightness and chroma are independent from each other in both young and older adults. Pupil responses to color lightness levels are unaffected by healthy aging, when correcting for smaller baseline pupil sizes in older adults. Older adults exhibit weaker pupil responses to chroma increases, predominantly along the Green-Magenta axis, while relatively sparing the Blue-Yellow axis. Our findings complement behavioral studies in providing physiological evidence that colors fade with age, with implications for color-based applications and interventions both in healthy aging and later-life neurodegenerative disorders.

"Better Living with Non-memory-led Dementia": protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme.

BACKGROUND: Non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being. Here, we present the protocol of a study aiming to assess the feasibility of a co-produced online educational programme for caregivers of people living PCA, PPA and bvFTD: the Better Living with Non-memory-led Dementia programme. METHODS: A randomised controlled feasibility trial will be conducted on a sample of 30 caregivers of people living with PCA, PPA and bvFTD. Participants will be recruited among members of the support organisation Rare Dementia Support (based at UCL in the UK). The intervention group will be given access to an 8-week co-produced web-based educational programme consisting of 6 modules addressing education about PCA, PPA and bvFTD and support strategies for the person with dementia and for the caregiver. The control group will receive treatment as usual (TAU). Feasibility will be measured through feasibility of recruitment, clinical measurement tools and acceptability. Clinical measures will be used to assess preliminary efficacy and data on completion rates, missing data and variability used to decide on measures to be included in a full-scale trial. Allocation ratio will be 2:1 (intervention:control) stratified by diagnosis. Feasibility of recruitment and acceptability will be assessed. Clinical measures will be administered at baseline and 8-week and 3-month post-randomisation. The control group will be offered access to the intervention at the completion of data collection. Participants will be unblinded, and all measures will be self-reported online. DISCUSSION: Online-delivered educational programmes show potential for improving care competency of caregivers and may contribute to overcoming geographical inequalities in local provision of support services. This pilot study will inform a fully powered international trial to determine the effectiveness of Better Living with Non-memory-led Dementia. TRIAL REGISTRATION: This trial has been registered prospectively on the Clinical Trials Registry on 1st September 2022, registration number NCT05525377.

Gaps in clinical research in frontotemporal dementia: A call for diversity and disparities-focused research.

Frontotemporal dementia (FTD) is one of the leading causes of dementia before age 65 and often manifests as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). FTD's exact clinical presentation varies by culture, language, education, social norms, and other socioeconomic factors; current research and clinical practice, however, is mainly based on studies conducted in North America and Western Europe. Changes in diagnostic criteria and procedures as well as new or adapted cognitive tests are likely needed to take into consideration global diversity. This perspective paper by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment examines how increasing global diversity impacts the clinical presentation, screening, assessment, and diagnosis of FTD and its treatment and care. It subsequently provides recommendations to address immediate needs to advance global FTD research and clinical practice.

"I felt like I had been put on the shelf and forgotten about" - lasting lessons about the impact of COVID-19 on people affected by rarer dementias.

BACKGROUND: The public health measures imposed in many countries to contain the spread of COVID-19 resulted in significant suspensions in the provision of support and care for people with dementia. The negative effects of these measures have been extensively reported. However, little is known about the specific impact on people with young onset, non-memory-led and inherited dementias. This group may have experienced different challenges compared to those with late onset dementia given their non-memory phenotypes and younger age. We explored the impact of the first COVID-19 lockdown on people living with familial Alzheimer's disease, behavioural variant frontotemporal dementia, familial frontotemporal dementia, dementia with Lewy bodies, posterior cortical atrophy and primary progressive aphasia and their carers in the UK and their self-reported strategies for coping. METHODS: This was a mixed methods study. An online survey was administered to people with dementia and family carers recruited via Rare Dementia Support. Free-text responses were analysed using framework analysis to identify key issues and themes. RESULTS: 184 carers and 24 people with dementia completed the survey. Overall, people with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%), well-being (57%) and changes to medication (26%) during lockdown. Carers reported a reduction in the support they received (55%) which impacted their own mental health negatively. Qualitative analysis of free-text responses shed light on how the disruption to routines, changes to roles and responsibilities, and widespread disconnection from friends, family and health and social care support varied according to phenotype. These impacts were exacerbated by a more general sense that precious time was being lost, given the progressive nature of dementia. Despite significant challenges, respondents demonstrated resilience and resourcefulness in reporting unexpected positives and strategies for adapting to confinement. CONCLUSIONS: This study has highlighted the specific impacts of the COVID-19 restrictions on people with young onset, non-memory-led and inherited dementias, including behavioural variant frontotemporal dementia, primary progressive aphasia and posterior cortical atrophy, and their carers. The specific challenges faced according to diagnosis and the self-reported strategies speak to the importance of - and may inform the development of - tailored support for these underrepresented groups more generally.

Diagnosis and Management of Posterior Cortical Atrophy.

Purpose of review: The study aims to provide a summary of recent developments for diagnosing and managing posterior cortical atrophy (PCA). We present current efforts to improve PCA characterisation and recommendations regarding use of clinical, neuropsychological and biomarker methods in PCA diagnosis and management and highlight current knowledge gaps. Recent findings: Recent multi-centre consensus recommendations provide PCA criteria with implications for different management strategies (e.g. targeting clinical features and/or disease). Studies emphasise the preponderance of primary or co-existing Alzheimer's disease (AD) pathology underpinning PCA. Evidence of approaches to manage PCA symptoms is largely derived from small studies. Summary: PCA diagnosis is frequently delayed, and people are likely to receive misdiagnoses of ocular or psychological conditions. Current treatment of PCA is symptomatic - pharmacological and non-pharmacological - and the use of most treatment options is based on small studies or expert opinion. Recommendations for non-pharmacological approaches include interdisciplinary management tailored to the PCA clinical profile - visual-spatial - rather than memory-led, predominantly young onset - and psychosocial implications. Whilst emerging disease-modifying treatments have not been tested in PCA, an accurate and timely diagnosis of PCA and determining underlying pathology is of increasing importance in the advent of disease-modifying therapies for AD and other albeit rare causes of PCA.

The early impacts of COVID-19 on people living with dementia: part I of a mixed-methods systematic review.

Objectives: The aim of this Part I systematic review was to understand the impact of the COVID-19 pandemic on the lives of people with dementia living in the community or in residential care. Part II focused on unpaid carers.Methods: This review was registered on PROSPERO [CRD42021248050]. Five data bases (PubMed, CINAHL, Embase, Scopus, Web of Science) were searched in July 2021. Studies were included if they reported on the impacts of the pandemic on people living with dementia, either in the community or residential settings, and published in English, German, Polish, or Spanish. Risk of bias was assessed using the Standard Quality Assessment QualSyst.Results: Forty papers from 33 studies reported on the effects of COVID-19 on people with dementia. Included studies were conducted across 15 countries, focusing on single-country evaluations except in one study. Three studies focused on care homes, whilst the remainder reported on the community. Studies were categorised into five impacts: Cognition; Independence and physical functioning; Behavioural symptoms; Well-being; and Access to care. All studies evidenced the negative pandemic impacts, including faster cognitive, physical, and behavioural deterioration, limited access to care, and poorer mental and social health.Conclusions: Future restrictions need to consider the need for people with dementia to stay cognitively, physically, and socially stimulated to live well, and this review provides a call for a future pandemic strategy for dementia. Longitudinal research is required on the long-term impacts of the pandemic on the lives of people with dementia, including time to care home entry.

The early impacts of COVID-19 on unpaid carers of people living with dementia: part II of a mixed-methods systematic review.

OBJECTIVES: With a lack of existing comprehensive reviews, the aim of this mixed-method systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. METHODS: This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. RESULTS: Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of social isolation, and reduced wellbeing. Specifically, reductions in access to care and support increased carer's unpaid caring tasks, removing any opportunities for temporary respite, and thus further increasing carer burden and reducing mental well-being in many. CONCLUSIONS: The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

A systematic review of the prevalence of depression, anxiety, and apathy in frontotemporal dementia, atypical and young-onset Alzheimer's disease, and inherited dementia.

OBJECTIVES: Depression, anxiety, and apathy are the most commonly reported neuropsychiatric symptoms (NPS) in Alzheimer's disease (AD). Understanding their prevalence in rarer dementias such as frontotemporal dementia (FTD), primary progressive aphasia (PPA), posterior cortical atrophy (PCA), young-onset AD (YOAD), and inherited dementias has implications for both clinical practice and research. In this study, we aimed to examine the current state of knowledge of the prevalence of these three NPS in less prevalent dementias. DESIGN: We conducted a systematic review based on searches of EMBASE, PsycINFO, and PubMed up to September 2019. RESULTS: 47 articles meeting inclusion criteria were identified. Depression, anxiety, and apathy were commonly reported across the phenotypes studied but their prevalence showed large variation between studies. Apathy showed the highest reported frequency in FTD (50-100% across studies), behavioral variant frontotemporal dementia (bvFTD) (73-100%), and YOAD (44-100%). Anxiety was frequently reported in FTD (0-100%) and bvFTD (19-63%). Depression showed the highest prevalence in FTD (7-69%) and YOAD (11-55%). Among the three variants of PPA, sv-PPA is the one most investigated (seven articles). Three or fewer articles were identified examining NPS in the remaining PPA variants, PCA, familial AD, and familial FTD. Inconsistency in the tools used to measure symptoms and small sample sizes were common methodological limitations. CONCLUSIONS: Future studies should consider the inclusion of larger sample sizes (e.g. through multicenter collaborations) and the use of harmonized protocols that include the combination of caregiver and patient-derived measures and symptom-specific questionnaires. More research is needed on the phenotype-specific barriers and facilitators for people living with dementia to successfully engage in self-reports of NPS.

Successful word retraining, maintenance and transference of practice to everyday activities: A single case experimental design in early onset alcohol-induced brain damage.

Word retraining programs have been shown to improve naming ability post-stroke and in progressive aphasias. Here, we investigated benefits for a 22-year-old Danish man (DJ), whose difficulties followed brain damage from heavy alcohol misuse. Using a multiple baseline-across-behaviours design (target behaviour: retrieval of word list items), DJ completed a 4-week "Look, Listen, Repeat" program on a computer. Ninety personally relevant target words were selected to create three matched lists. List 1 was trained for 10 sessions over 2 weeks, followed by 9 sessions for List 2 over 2 weeks, while the third list remained untrained. Naming performance was evaluated at baseline, during the intervention, and at 1 and 4 months post-training. Naming improved following each intervention block (p < .001), with only one data point overlapping between the baseline and treatment phases for trained items. Untrained words remained unchanged (p = 1.00), with 50% of data points non-overlapping across baseline to treatment phases. Performance was maintained over time, and appeared to generalize, with DJ naming more trained objects in their natural setting (85%) than untrained items (64%). While more evidence is needed, brief (20-minute), intensive (5-day/week) word retraining programs may assist word retrieval for people with brain damage associated with alcohol misuse.

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.

Semantic Variant Primary Progressive Aphasia: Practical Recommendations for Treatment from 20 Years of Behavioural Research.

People with semantic variant primary progressive aphasia (svPPA) present with a characteristic progressive breakdown of semantic knowledge. There are currently no pharmacological interventions to cure or slow svPPA, but promising behavioural approaches are increasingly reported. This article offers an overview of the last two decades of research into interventions to support language in people with svPPA including recommendations for clinical practice and future research based on the best available evidence. We offer a lay summary in English, Spanish and French for education and dissemination purposes. This paper discusses the implications of right- versus left-predominant atrophy in svPPA, which naming therapies offer the best outcomes and how to capitalise on preserved long-term memory systems. Current knowledge regarding the maintenance and generalisation of language therapy gains is described in detail along with the development of compensatory approaches and educational and support group programmes. It is concluded that there is evidence to support an integrative framework of treatment and care as best practice for svPPA. Such an approach should combine rehabilitation interventions addressing the language impairment, compensatory approaches to support activities of daily living and provision of education and support within the context of dementia.

When it is not primary progressive aphasia: A scoping review of spoken language impairment in other neurodegenerative dementias.

BACKGROUND: Progressive difficulties with spoken language occur across the spectrum of degenerative dementia. When not a primary presenting and dominant symptom, language difficulties may be overlooked in favor of more prominent cognitive, behavior, or motor deficits. The aim of this scoping review is to examine the extent and nature of the research evidence describing (1) the spoken language impairments found in non-language led dementias, (2) their impact on everyday living, and (3) the reported language interventions. METHODS: We searched PubMed, MEDLINE, OVID-EMBASE, PsycINFO, and SpeechBITE using terms related to spoken language for the following dementia types: Parkinson's disease dementia (PDD), dementia with Lewy bodies (DLB), progressive supranuclear palsy (PSP), cortico-basal syndrome (CBS), behavior variant frontotemporal dementia (bvFTD), early-onset Alzheimer's disease (EOAD), posterior cortical atrophy (PCA), and motor neuron disease associated with FTD (MND+FTD). Risk of bias was assessed with the QualSyst tool. RESULTS: Seventy-three eligible studies were included. A wide range of spoken language impairments were reported, involving both linguistic (e.g., syntactic processing) and other cognitive (e.g., sustained attention) underlying mechanisms. Although the severity of these deficits was scarcely reported, in some cases they manifested as non-fluent, dynamic, and global aphasias. No papers in the review described either the impact of these language impairments on everyday living or language therapies to treat them. DISCUSSION: There is a need to understand better the level of disability produced by language impairment in people living with non-language-led dementias. Our findings suggest three calls for action: (1) research studies should assess the clinical relevance of any spoken language deficits examined, (2) both linguistic and cognitive underlying mechanisms should be fully described (to inform the design of effective language and behavioral interventions), and (3) trials of language therapy should be conducted in those groups of individuals where significant language impairment is proved.

The effect of COVID-19 isolation measures on the cognition and mental health of people living with dementia: A rapid systematic review of one year of quantitative evidence.

BACKGROUND: COVID-19 prevention and control policies have entailed lockdowns and confinement. This study aimed to summarize the global research evidence describing the effect of COVID-19 isolation measures on the health of people living with dementia. METHODS: We searched Pubmed, PsycINFO and CINAHL up to 27th of February 2021 for peer-reviewed quantitative studies about the effects of isolation during COVID-19 on the cognitive, psychological and functional symptoms of people with dementia or mild cognitive impairment. The Joanna Briggs Institute critical appraisal tool was used to conduct the quality assessment. PROSPERO registration: CRD42021229259. FINDINGS: 15 eligible papers were identified, examining a total of 6442 people with dementia. 13/15 studies investigated people living in the community and 2 in care homes. Out of 15 studies, 9 (60%) reported changes in cognition and 14 (93%) worsening or new onset of behavioral and psychological symptoms. Six studies (46%) reported a functional decline in daily activities in a variable proportion of the population analyzed. INTERPRETATION: COVID-19 isolation measures have damaged the cognitive and mental health of people with dementia across the world. It is urgent to issue guidance that balances infection control measures against the principles of non-maleficence to guarantee fair and appropriate care during pandemic times for this population.

Neuropsychological deficits in Posterior Cortical Atrophy and typical Alzheimer's disease: A meta-analytic review.

AIMS: To identify cognitive tests that best differentiate between Posterior Cortical Atrophy (PCA) and typical Alzheimer's Disease (tAD), as well as PCA and healthy control (HC) participants. METHOD: Medline, PsycInfo and Web of Science were systematically searched using terms related to PCA, tAD, and cognitive testing. Seventeen studies were identified, including 441 PCA, 391 tAD, and 284 HC participants. Standardised effect sizes of mean scores were calculated to measure performance differences on cognitive tests for PCA versus tAD and PCA versus HC groups. Meta-analyses used a random effects model. RESULTS: The most discriminating cognitive tests for PCA and tAD presentations were measures of visuospatial function and verbal memory. Large, significant effect sizes were produced for all measures of visuospatial function, most notably for Rey-Osterrieth Copy (Hedges' g = -2.79), VOSP Fragmented letters (Hedges' g = -1.73), VOSP Dot Counting (Hedges' g = -1.74), and VOSP Cube Analysis (Hedges' g = -1.98). For measures of verbal memory, the RAVLT delay and Digit Span Backwards produced significant medium effects (Hedges' g = .62 and -.56, respectively). CONCLUSION: Establishing a common framework for testing individuals with PCA has important implications for diagnosis and treatment, and forms a practical objective for future research. Findings from this meta-analysis suggest that measures of visuospatial function and verbal memory would form an important part of this framework.

Dementia wellbeing and COVID-19: Review and expert consensus on current research and knowledge gaps.

OBJECTIVES: In response to a commissioned research update on dementia during the COVID-19 pandemic, a UK-based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research. METHODS: We supplemented a rapid literature search (including unpublished, non-peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID-19 with expert group members' consensus about future research needs. From this we generated potential research questions the group judged to be relevant that were not covered by the existing literature. RESULTS: Themes emerged from 141 studies within the six domains of the NHS England COVID-19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. We describe current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population-representative longitudinal studies to monitor longer-term impacts, and the importance of reporting dementia-related findings within broader health and care studies. CONCLUSIONS: The COVID-19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding questions to develop evidence-based measures to improve the quality of life of people affected by dementia.

Non-primary progressive language impairment in neurodegenerative conditions: protocol for a scoping review.

BACKGROUND: Progressive language difficulties arise in many neurodegenerative conditions, causing significant impact upon patients and families. This occurs most obviously in primary progressive aphasia (PPA) but can also occur within other forms of progressive disease. In these cases, language decline may be significant, but as they are not the presenting or dominant symptom, may be overlooked in favour of more prominent cognitive, behaviour or motor deficits. To date, there has been no systematic investigation into non-primary progressive aphasia. This scoping review aims to describe the currently reported language impairments found in non-language-led dementias and identify their clinical relevance, defined as the impact on everyday living. It also seeks to identify the reported interventions for language impairment in this patient group to-date. METHOD: We will conduct a scoping review of published studies that have assessed and/or treated aphasia in people diagnosed with a neurodegenerative condition other than primary progressive aphasia. The systematic search will include the electronic databases PubMed, MEDLINE, OVID-EMBASE, PsycINFO, and speechBITE, using search terms for specific non-language-led dementia subtypes. Findings will be mapped and described according to the type of language difficulties identified and rehabilitation approaches employed. Intervention studies will be evaluated for their methodological rigour using validated scales. DISCUSSION: This scoping review will provide an overview of the types of aphasia found in neurodegenerative conditions where language dysfunction is not the primary focus. Current treatment approaches (and gaps in the provision of treatment) will be identified.