The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce.

BACKGROUND: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. METHODS: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations. RESULTS: Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. CONCLUSIONS: These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes.

Perceptions of vision care following neurological impairment: a qualitative study.

BACKGROUND: Visual impairment is a common consequence of neurological impairments, and can impact a person's ability to undertake everyday tasks, affecting their confidence and mental health. Previous qualitative research in the UK has shown inequalities to exist where patients are accessing vision care after stroke, but little is known around the experiences of accessing vision care following other neurological impairments, and a lack of national guidelines prevent standardised care planning. The aim of this qualitative study is to explore the perceptions of vision care after neurological impairment, and to identify possible inequalities and support mechanisms, where it has been possible to access vision care. METHODS: University ethical approval was obtained, and adults with a visual impairment as a result of a neurological impairment were offered an in-depth interview to explore their vision care experiences. Data were collected between April and November 2021 and analysed using iterative, thematic analysis (TA), informed by a social constructionist ideology. RESULTS: Seventeen participants were recruited. Three overarching themes were conceptualised in relation to the participants' perception of vision care: Making sense of the visual impairment; The responsibility of vision care; and Influential factors in care quality perception. CONCLUSION: Inequalities were noted by participants, with most reporting a lack of suitable vision care offered as part of their neurological rehabilitation. Participants were thus burdened with the task of seeking their own support online, and encountered inaccurate and worrying information in the process. Participants noted changes in their identity, and the identity of their family carers, as they adjusted to their vision loss. The findings from this research highlight a need for clinicians to consider the long-term impact of vision loss after neurological impairment, and ensure patients are provided with adequate support and information, and appropriate referral pathways, alleviating this patient burden.

A systematic review on inequalities in accessing and using community-based social care in dementia.

OBJECTIVES: To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia. DESIGN: Mixed-methods systematic review. SETTING: Community-based social care (such as day care, respite care, paid home care, and peer support groups). PARTICIPANTS: People living with dementia and unpaid carers. MEASUREMENTS: Seven databases were searched in March 2022, including English and German evidence published from 2000 focusing on inequalities in community-based social care for dementia across the globe. Titles and abstracts were screened by two reviewers, with all full texts screened by two reviewers also. Study quality was assessed using QualSyst. RESULTS: From 3,904 screened records, 39 papers were included. The majority of studies were qualitative, with 23 countries represented. Barriers and facilitators could be categorized into the following five categories/themes: situational, psychological, interpersonal, structural, and cultural. Barriers were notably more prominent than facilitators and were multifaceted, with many factors hindering or facilitating access to social care linked together. CONCLUSIONS: People with dementia and carers experience significant barriers in accessing care in the community, and a varied approach on multiple levels is required to address systemic and individual-level barriers to enable more equitable access to care for all.

The perception of risk in contracting and spreading COVID-19 amongst individuals, households and vulnerable groups in England: a longitudinal qualitative study.

BACKGROUND: Social distancing restrictions to manage the COVID-19 pandemic were put in place from March 2020 in the United Kingdom (UK), with those classed as "highly clinically vulnerable" advised to shield entirely and remain at home. However, personal risk perception has been shown to comprise of various elements beyond those outlined in the national pandemic guidance. It is unclear whether those deemed COVID-19 vulnerable identified as high-risk to COVID-19 and thus complied with the relevant advice. The aim of this research is to explore the perception of risk in catching and spreading COVID-19, amongst individuals from individual households, and vulnerable groups in a region of the UK. METHODS: Two individual, semi-structured interviews were conducted, four-weeks apart, with adults living in households in the Liverpool City Region. At the follow-up interview, participants were given the option of using photo-elicitation to guide the discussion. Reflexive thematic analysis was employed to conceptualise themes. The qualitative analysis was underpinned with symbolic interactionism. RESULTS: Twenty-seven participants (13:14 males:females, and 20 with a vulnerable risk factor to COVID-19) completed a baseline interview, and 15 of these completed a follow-up interview four-weeks later. Following thematic analysis, two overarching themes were conceptualised, with subthemes discussed: theme 1) Confusion and trust in the risk prevention guidance; and theme 2) Navigating risk: compliance and non-compliance with public health guidance. CONCLUSION: Participants developed their own understanding of COVID-19 risk perception through personal experience and comparison with others around them, irrespective of vulnerability status. COVID-19 guidance was not complied with as intended by the government, and at times even rejected due to lack of trust. The format in which future pandemic guidance is conveyed must be carefully considered, and take into account individuals' experiences that may lead to non-compliance. The findings from our study can inform future public health policy and interventions for COVID-19 and future pandemics.

Emotional and Mental Wellbeing Following COVID-19 Public Health Measures on People Living With Dementia and Carers.

BACKGROUND: To date, there appears to be no evidence on the longer-term impacts caused by COVID-19 and its related public health restrictions on some of the most vulnerable in our societies. The aim of this research was to explore the change in impact of COVID-19 public health measures on the mental wellbeing of people living with dementia (PLWD) and unpaid carers. METHOD: Semi-structured, follow-up telephone interviews were conducted with PLWD and unpaid carers between June and July 2020. Participants were asked about their experiences of accessing social support services during the pandemic, and the impact of restrictions on their daily lives. RESULTS: 20 interviews were conducted and thematically analyzed, which produced 3 primary themes concerning emotional responses and impact to mental health and wellbeing during the course of the pandemic: 1) Impact on mental health during lockdown, 2) Changes to mental health following easing of public health, and 3) The long-term effect of public health measures. CONCLUSIONS: The findings from this research shed light on the longer-term psychological impacts of the UK Government's public health measures on PLWD and their carers. The loss of social support services was key in impacting this cohort mentally and emotionally, displaying a need for better psychological support, for both carers and PLWD.

Are we allowed to visit now? Concerns and issues surrounding vaccination and infection risks in UK care homes during COVID-19.

BACKGROUND: vaccination uptake in the UK and increased care home testing are likely affecting care home visitation. With scant scientific evidence to date, the aim of this longitudinal qualitative study was to explore the impact of both (vaccination and testing) on the conduct and experiences of care home visits. METHODS: family carers of care home residents with dementia and care home staff from across the UK took part in baseline (October/November 2020) and follow-up interviews (March 2021). Public advisers were involved in all elements of the research. Data were analysed using thematic analysis. RESULTS: across 62 baseline and follow-up interviews with family carers (n = 26; 11) and care home staff (n = 16; 9), five core themes were developed: delayed and inconsistent offers of face-to-face visits; procedures and facilitation of visits; variable uptake of the COVID-19 vaccine; misinformation, education and free choice; frustration and anger among family carers. The variable uptake in staff, compared to family carers, was a key factor seemingly influencing visitation, with a lack of clear guidance leading care homes to implement infection control measures and visitation rights differently. CONCLUSIONS: we make five recommendations in this paper to enable improved care home visitation in the ongoing, and in future, pandemics. Visits need to be enabled and any changes to visiting rights must be used as a last resort, reviewed regularly in consultation with residents and carers and restored as soon as possible as a top priority, whilst more education needs to be provided surrounding vaccination for care home staff.

Working in a care home during the COVID-19 pandemic: How has the pandemic changed working practices? A qualitative study.

BACKGROUND: The pandemic has significantly affected care homes' residents and families through the national visiting restrictions. However, less is known on the impact these changes have had on the care home workforce. The aim of this research was to explore the impact of COVID-19 on the working practices of care home staff, caring for people living with dementia. METHODS: Remote qualitative, semi-structured interviews were conducted with care home staff caring for people living with dementia (PLWD) in the UK. RESULTS: Participants were recruited to the larger programme of research via convenience sampling. Interviews were conducted via telephone or online platforms. This research employed inductive thematic analysis. Sixteen care home staff were included in this study. Three overarching themes were developed from the analysis that conveyed changes to the everyday working practices of the care home workforce and the impact such changes posed to staff wellbeing: (1) Practical implications of working in a care home during the COVID-19 pandemic; (2); Staff values and changes to the staff roles (3): Impact to the care home staff and concerns for the care sector. CONCLUSIONS: The COVID-19 pandemic has significantly disrupted the daily working practices of care home staff, with staff forced to adopt additional roles on top of increased workloads to compensate for the loss of external agencies and support. Support and guidance must be offered urgently to inform care home staff on how to best adapt to their new working practices, ensuring that they are adequately trained.

End of life care in UK care homes during the COVID-19 pandemic: a qualitative study.

PURPOSE: To report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic. METHODS: UK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis. RESULTS: Forty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time. CONCLUSION: It is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing.

Navigating the new normal: accessing community and institutionalised care for dementia during COVID-19.

OBJECTIVES: Little is known about how community services and institutional care settings have adapted to providing support since the COVID-19 pandemic. The aim was to explore how these care services have adapted during the pandemic in the UK and are providing care to people living with dementia (PLWD) and carers. METHOD: Semi-structured telephone interviews were conducted in June and July 2020 with 16 purposefully sampled unpaid dementia carers. Participants were asked about their experiences of accessing care services since the lockdown, and whether they were beneficial, if accessed at all. RESULTS: Three themes were identified: (1) Impacts of no activities; (2) Difficulties accessing care during the pandemic; (3) Remote vs. face-to-face support. Loss of access to previously enjoyed activities and having had to shield for many PLWD is suggested to have led to severe physical and cognitive deteriorations, advancing the dementia. Where remote support was available, this was helpful to some, but did not replace the benefits of face-to-face support. Where PLWD were residing in a care home, carers had very limited remote access. CONCLUSIONS: This is the first study to explore the impact on carers both from a community and institutionalised care angle. Few care services have adapted to providing remote support. With the vaccine taking time to be accessible to everyone, it is vital for organisations to work closely with carers and PLWD to adapt services to provide much needed support.

Guilt, tears and burnout-Impact of UK care home restrictions on the mental well-being of staff, families and residents.

AIMS: The aim of this study was to explore the impact of the pandemic on the emotional and mental well-being of family carers, care home staff and residents, in light of changing restrictions, increased testing and vaccination rollout in the UK. DESIGN: Longitudinal, qualitative semi-structured interview study. METHODS: Remote semi-structured interviews were conducted with family carers of care home residents with dementia and care home staff from different care homes across the UK. Baseline and follow-up interviews were conducted in October/November 2020 and March 2021, respectively. Data were analysed using inductive thematic analysis involving members of the public with caring experiences. RESULTS: In all, 42 family carers and care home staff participated at baseline, with 20 family carers and staff followed up. We identified four themes: (1) Developing anger and frustration; (2) Impact on relationships; (3) Stress and burnout; and (4) Behavioural changes, and perceived impact on residents. The mental health of everyone involved, including family carers, care home staff and residents, has been negatively affected, and relationships between family carers and staff have been severely strained. There was a general lack of adequate mental health support, with little relief. CONCLUSIONS: The pandemic has had a detrimental impact on the lives of those surrounding care homes-from residents and staff to family carers. Consideration should be given on how to best support the mental health needs of all three groups, by providing adequate easily accessible mental health care for all. This should also focus on rebuilding the relationships between family carers and care home staff. IMPACT: This is the first paper to highlight the effects of the long-lasting and miscommunicated restrictions on residents, carers and care home staff, and highlight the urgent need for continued mental health support.

"A piece of paper is not the same as having someone to talk to": accessing post-diagnostic dementia care before and since COVID-19 and associated inequalities.

BACKGROUND: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic. METHODS: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis. RESULTS: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines. CONCLUSIONS: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.

The potential dangers of not understanding COVID-19 public health restrictions in dementia: "It's a groundhog day - every single day she does not understand why she can't go out for a walk".

BACKGROUND: Sudden public health restrictions can be difficult to comprehend for people with cognitive deficits. However, these are even more important for them to adhere to due to their increased levels of vulnerability, particularly to COVID-19. With a lack of previous evidence, we explored the understanding and changes in adherence to COVID-19 public health restrictions over time in people living with dementia (PLWD). METHODS: Unpaid carers and PLWD were interviewed over the phone in April 2020, shortly after the nationwide UK lockdown, with a proportion followed up from 24th June to 10th July. Participants were recruited via social care and third sector organisations across the UK, and via social media. FINDINGS: A total of 70 interviews (50 baseline, 20 follow-up) were completed with unpaid carers and PLWD. Five themes emerged: Confusion and limited comprehension; Frustration and burden; Putting oneself in danger; Adherence to restrictions in wider society; (Un) changed perceptions. Most carers reported limited to no understanding of the public health measures in PLWD, causing distress and frustration for both the carer and the PLWD. Due to the lack of understanding, some PLWD put themselves in dangerous situations without adhering to the restrictions. PLWD with cognitive capacity who participated understood the measures and adhered to these. DISCUSSION: In light of the new second wave of the pandemic, public health measures need to be simpler for PLWD to avoid unwilful non-adherence. Society also needs to be more adaptive to the needs of people with cognitive disabilities more widely, as blanket rules cause distress to the lives of those affected by dementia.

Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study.

OBJECTIVES: Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. METHOD: PLWD and unpaid carers were interviewed via telephone in April 2020. Transcripts were analysed using thematic analysis. Demographic characteristics including household Index of Multiple Deprivation score and weekly hours of social support service usage before and since the COVID-19 outbreak were also collected. Paired samples t-tests was used to compare the mean of weekly hours of social support service usage before and since the outbreak. RESULTS: 50 semi-structured interviews were conducted with unpaid carers (n = 42) and PLWD (n = 8). There was a significant reduction in social support service usage since the outbreak. Thematic analysis identified three overarching themes: (1) Loss of control; (2) Uncertainty; (3) Adapting and having to adapt to the new normal. Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open. Carers were worried about whether the person they cared for would still be able to re-join social support services. CONCLUSIONS: PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions.

"Eye" Don't See: An Analysis of Visual Symptom Reporting by Stroke Survivors from a Large Epidemiology Study.

AIM: The purpose was to explore the reported symptoms of post-stroke visual impairment from a large multi-centre prospective epidemiology study. METHODS: Visual assessment, including a case history, visual acuity, ocular alignment, ocular motility, visual fields, visual inattention and visual perception, was attempted for all stroke admissions to three acute stroke units. RESULTS: Of 1500 stroke admissions, 1204 received a visual assessment, of which 867 had one or more visual impairments. Of those identified with visual impairment 44.4% reported visual symptoms. The most common visual symptoms were blurred/altered vision (22.1%), field loss (12.6%), diplopia (9.9%) and reading difficulties (9.7%). 703 were identified to have a new visual impairment, 47.1% reported visual symptoms. No visual symptoms were reported by 38.4% and 14.5% were unable to report symptoms. Visual symptoms were first reported at a median of 3 days (IQR2-8) and mean of 16.0 days (SD39.8) from stroke onset. Those that reported symptoms were younger (p<0.001) and more independent (p<0.001) than those who were asymptomatic or unable to report. No significant difference was found between likelihood of reporting visual symptoms or not based on severity of reduced central vision, visual field loss or visual inattention. Stroke survivors with a manifest squint and cranial nerve palsies were significantly more likely to report symptoms. CONCLUSIONS: Almost 40% of stroke survivors with new onset visual impairment do not or cannot report visual symptoms. This highlights the importance of objective screening to ensure stroke survivors receive appropriate and timely referral to specialist services to access necessary treatment.

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study.

BACKGROUND: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. METHODS: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. RESULTS: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. CONCLUSIONS: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.

Interventions for eye movement disorders due to acquired brain injury.

BACKGROUND: Acquired brain injury can cause eye movement disorders which may include: strabismus, gaze deficits and nystagmus, causing visual symptoms of double, blurred or 'juddery' vision and reading difficulties. A wide range of interventions exist that have potential to alleviate or ameliorate these symptoms. There is a need to evaluate the effectiveness of these interventions and the timing of their implementation. OBJECTIVES: We aimed to assess the effectiveness of any intervention and determine the effect of timing of intervention in the treatment of strabismus, gaze deficits and nystagmus due to acquired brain injury. We considered restitutive, substitutive, compensatory or pharmacological interventions separately and compared them to control, placebo, alternative treatment or no treatment for improving ocular alignment or motility (or both). SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (containing the Cochrane Eyes and Vision Trials Register) (2017, Issue 5), MEDLINE Ovid, Embase Ovid, CINAHL EBSCO, AMED Ovid, PsycINFO Ovid, Dissertations & Theses (PQDT) database, PsycBITE (Psychological Database for Brain Impairment Treatment Efficacy), ISRCTN registry, ClinicalTrials.gov, Health Services Research Projects in Progress (HSRProj), National Eye Institute Clinical Studies Database and the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP). The databases were last searched on 26 June 2017. No date or language restrictions were used in the electronic searches for trials. We manually searched the Australian Orthoptic Journal, British and Irish Orthoptic Journal, and ESA, ISA and IOA conference proceedings. We contacted researchers active in this field for information about further published or unpublished studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs) of any intervention for ocular alignment or motility deficits (or both) due to acquired brain injury. DATA COLLECTION AND ANALYSIS: Two review authors independently selected studies and extracted data. We used standard methods expected by Cochrane. We employed the GRADE approach to interpret findings and assess the quality of the evidence. MAIN RESULTS: We found five RCTs (116 participants) that were eligible for inclusion. These trials included conditions of acquired nystagmus, sixth cranial nerve palsy and traumatic brain injury-induced ocular motility defects. We did not identify any relevant studies of restitutive interventions.We identified one UK-based trial of a substitutive intervention, in which botulinum toxin was compared with observation in 47 people with acute sixth nerve palsy. At four months after entry into the trial, people given botulinum toxin were more likely to make a full recovery (reduction in angle of deviation within 10 prism dioptres), compared with observation (risk ratio 1.19, 95% CI 0.96 to 1.48; low-certainty evidence). These same participants also achieved binocular single vision. In the injection group only, there were 2 cases of transient ptosis out of 22 participants (9%), and 4 participants out of 22 (18%) with transient vertical deviation; a total complication rate of 24% per injection and 27% per participant. All adverse events recovered. We judged the certainty of evidence as low, downgrading for risk of bias and imprecision. It was not possible to mask investigators or participants to allocation, and the follow-up between groups varied.We identified one USA-based cross-over trial of a compensatory intervention. Oculomotor rehabilitation was compared with sham training in 12 people with mild traumatic brain injury, at least one year after the injury. We judged the evidence from this study to be very low-certainty. The study was small, data for the sham training group were not fully reported, and it was unclear if a cross-over study design was appropriate as this is an intervention with potential to have a permanent effect.We identified three cross-over studies of pharmacological interventions for acquired nystagmus, which took place in Germany and the USA. These studies investigated two classes of pharmacological interventions: GABAergic drugs (gabapentin, baclofen) and aminopyridines (4-aminopyridines (AP), 3,4-diaminopyridine (DAP)). We judged the evidence from all three studies as very low-certainty because of small numbers of participants (which led to imprecision) and risk of bias (they were cross-over studies which did not report data in a way that permitted estimation of effect size).One study compared gabapentin (up to 900 mg/day) with baclofen (up to 30 mg/day) in 21 people with pendular and jerk nystagmus. The follow-up period was two weeks. This study provides very low-certainty evidence that gabapentin may work better than baclofen in improving ocular motility and reducing participant-reported symptoms (oscillopsia). These effects may be different in pendular and jerk nystagmus, but without formal subgroup analysis it is unclear if the difference between the two types of nystagmus was chance finding. Quality of life was not reported. Ten participants with pendular nystagmus chose to continue treatment with gabapentin, and one with baclofen. Two participants with jerk nystagmus chose to continue treatment with gabapentin, and one with baclofen. Drug intolerance was reported in one person receiving gabapentin and in four participants receiving baclofen. Increased ataxia was reported in three participants receiving gabapentin and two participants receiving baclofen.One study compared a single dose of 3,4-DAP (20 mg) with placebo in 17 people with downbeat nystagmus. Assessments were made 30 minutes after taking the drug. This study provides very low-certainty evidence that 3,4-DAP may reduce the mean peak slow-phase velocity, with less oscillopsia, in people with downbeat nystagmus. Three participants reported transient side effects of minor perioral/distal paraesthesia.One study compared a single dose of 4-AP with a single dose of 3,4-DAP (both 10 mg doses) in eight people with downbeat nystagmus. Assessments were made 45 and 90 minutes after drug administration. This study provides very low-certainty evidence that both 3,4-DAP and 4-AP may reduce the mean slow-phase velocity in people with downbeat nystagmus. This effect may be stronger with 4-AP. AUTHORS' CONCLUSIONS: The included studies provide insufficient evidence to inform decisions about treatments specifically for eye movement disorders that occur following acquired brain injury. No information was obtained on the cost of treatment or measures of participant satisfaction relating to treatment options and effectiveness. It was possible to describe the outcome of treatment in each trial and ascertain the occurrence of adverse events.

The experiences of caring for someone with dementia and a learning disability: A qualitative systematic review.

BACKGROUND: The life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia's progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal carers' experiences and needs of caring for someone with both a learning disability and dementia. METHODS: Six electronic databases (PubMed, PsycINFO, Cochrane Library, Prospero, Scopus, CINAHL), were searched in May 2022, utilising a predefined search strategy. Thirteen papers fulfilled inclusion criteria and were included in in the review. RESULTS: Thematic synthesis was used to explore and synthesise the qualitative findings of the studies. Four conceptual themes were identified following analysis: Knowledge and skills, Accessing support, Repercussions of dementia for carers, Influences of continuity of caring role. CONCLUSION: There are significant training and educational needs for all carers who support the dual diagnosis of dementia and learning disability. Differences between family and formal carers relate to the organisational support and process available to formal carers. Parity across services combined with sufficiently trained carers may support dementia diagnosis and improve quality of care provided. Further research is needed to address environmental, and economic barriers carers face to facilitate ageing in place for their care recipients.

Do community-based singing interventions have an impact on people living with dementia and their carers? A mixed-methods study protocol.

INTRODUCTION: Psychosocial interventions have been shown to improve mood, relieve stress and improve quality of life for people living with dementia (PwD). To date, most evaluations of singing interventions have focused on the benefits for PwD and not their carers. This research aims to evaluate the benefits of dementia singing groups for both PwD and their carers. METHODS AND ANALYSIS: This 2-year project will observe the impact of two different singing intervention services, one combining singing alongside dance and another that includes a sociable lunch. This project will aim to recruit a total of n=150 PwD and n=150 carers across the two singing interventions. Using a mixed-methods approach, the influence of both services will be analysed via the following outcome measures: quality of life, neuropsychiatric symptoms, social isolation, loneliness, cognition, carer burden and depressive symptoms in PwD and their carers using a prestudy/poststudy design. Regression models will be used to analyse the data with time (pre/post) as the exposure variable. Semistructured interviews will be conducted with a subset of people (n=40) to further investigate the impact of singing services with a specific focus on the acceptability of the interventions, barriers to access and prolonged engagement and potential for remote delivery. Interview data will be analysed using Braun and Clarke's reflexive thematic analysis, and public advisers will assist with coding the transcripts. A social return on investment analysis will be conducted to determine the social impact of the services. ETHICS AND DISSEMINATION: This project has received ethical approval from the University of Liverpool's Ethics Committee (App ref: 12374) and Lancaster University's Ethics Committee (App ref: 3442). All participants will provide informed consent to participate. Results will be presented at national and international conferences, published in scientific journals and publicly disseminated to key stakeholders.

Changes to Visual Parameters Following Virtual Reality Gameplay.

Introduction: Virtual reality (VR) gameplay is popular with a range of games and educational resources available. However, it puts high demands on the visual system. Current evidence shows conflicting impacts on visual parameters. Therefore, this study explores the changes to vision following VR gameplay. Methods: The study was conducted at the School of Health Sciences, University of Liverpool. All participants had binocular vision with good visual acuity and no manifest strabismus. Participants were assessed before and after playing 15 minutes of the VR game Beat Saber, which incorporated convergence and divergence movements. Clinical assessments including near point of convergence (NPC) and near point of accommodation (NPA) using the RAF rule; accommodative convergence to accommodation (AC/A) ratio; motor fusion using the prism fusion range (at 33cm), accommodation facility using +2.00/-2.00DS flipper lenses, and stereoacuity using the Frisby stereo test were assessed before and after playing. Results: Seventy-eight participants (19-25 years old) were included in the study, with 16 males and 41 females respectively. The breakpoint of convergence reduced by 0.5 cm (p = 0.001). The binocular accommodative facility improved by 2 cycles per minute (cpm); p = 0.004. The mean, near horizontal prism fusion range (PFR) base break and recovery points both worsened by of 5.0 dioptres (p = 0.003), whereas the mean near horizontal PFR base in recovery point improved by of 4.0 dioptres (p = 0.003). Discussion: The study validated previous findings as VR gameplay over-exercised and fatigued convergence muscles, but to a small degree. The VR experience improved the participants' ability to change focus quickly and improve accommodation, as well as the divergence function of the eye. However, as the participants were retested directly after the VR gameplay, the findings were limited to short term effects on vision.

Developing a stroke-vision care pathway: a consensus study.

PURPOSE: We aimed to develop a stroke-vision care pathway for stroke survivors with visual impairment. METHODS: A literature review searched key electronic bibliographic databases for care pathways related to stroke/vision. Two focus group meetings using semi-structured/nominal group technique reached consensus on items relevant for inclusion in a stroke-vision care pathway. Following the development of the pathway, we obtained feedback through consultation with patient and professional groups. RESULTS: The literature review identified two care pathways relevant to acute stroke and generic vision disorders. Outputs from focus groups related to how stroke survivors present with vision problems; the time points at which stroke survivors present with vision symptoms; the relevance of different types of visual condition to different vision services; the importance of support services supplementary to hospital services and; the importance of key resources to promote awareness of vision problems in stroke survivors. Refinement of the pathway considered time duration from stroke onset, reporting of symptoms to services, and signposting/referrals required dependent on visual condition type. CONCLUSIONS: This new stroke-vision care pathway is a process pathway describing potential options for stroke survivors with visual impairment to access health care and obtain appropriate referral(s) to vision services relevant to their specific vision problem(s).IMPLICATIONS FOR REHABILITATIONVisual impairment is a common consequence of stroke.It is imperative that those who care for stroke survivors are aware of the visual consequences of stroke and make the appropriate referrals for vision and support services.The stroke-vision care pathway is a process pathway that describes the potential options for stroke survivors with visual impairment to access health care and obtain the appropriate referral(s) to vision services relevant to their specific vision problem(s).The stroke-vision care pathway is available (free to download) from the VISION research unit (www.vision-research.co.uk) website and available as supplemental information with this publication.