Support care needs of people with hearing and vision impairment in dementia: a European cross-national perspective.

PURPOSE: Aging-related sensory impairments are among the most common and disabling comorbidities in people with dementia (PwD). This study explored the unmet support care needs (SCNs) from the perspectives of people with hearing and/or vision impairment in dementia (PwD), and their care partners in Europe. METHODS: This was a two-phase mixed methods study. We administered standardized questionnaires of SCNs and quality of life (QoL) to PwD with hearing and/or vision impairment (n = 97), and their care partners (n = 97) in the UK, France, and Cyprus. Next, a purposive sub-sample of 34 participants (PwD and care partners) participated as focus groups (FGs) or semi-structured interviews to explore their SCNs in depth. RESULTS: Over 94% of the participants reported unmet SCNs (median, 13 (range 5-23)). Nearly three-quarters reported SCNs in the moderate to high range, with the most prevalent unmet SCNs for PwD being in the psychological (>60%) and physical domains (>56%), followed by the need for health information (>46%). Emergent qualitative themes were: (1) the need for tailored support care interventions; (2) care burden, social isolation, and loneliness arising from the combined problems; (3) the need for adequate support from professionals from the different fields, including education around the use of sensory aids. Both study phases revealed that SCNs were highly individualized. CONCLUSIONS: This cross-national study revealed that PwD with sensory impairment and their care partners experience a wide range of unmet SCNs, the interactions between sensory impairments, SCNs and QoL are also complex. A tailored intervention could address these unmet SCNs, including additional support with sensory aids, psychological support, more information about concurrent impairments, and joined up health systems providing care.Implications for rehabilitationA majority of participants with combined age-related hearing, vision, and cognitive impairment had unmet SCNs.The needs of care partners including the risk of loneliness and social isolation, need to be considered.Individually tailored, specific interventions for hearing, vision, and cognitive impairment should incorporate physical and psychological support, as well as education.

A randomised controlled trial of hearing and vision support in dementia: Protocol for a process evaluation in the SENSE-Cog trial.

BACKGROUND: Optimising hearing and vision function may be important in improving a range of outcomes for people living with dementia (PwD) and their companions. The SENSE-Cog cross-national randomised controlled trial (RCT) is evaluating the effectiveness of a sensory intervention (SI) to improve quality of life for PwD with concurrent hearing and/or vision impairment, in five European countries. To ascertain how or why the intervention will, or will not, achieve its outcomes, we have designed a process evaluation to explore potential discrepancies between expected and observed outcomes. This will also help us to understand how context may influence the outcomes. Here we describe the protocol for this process evaluation, which is embedded within the RCT. METHODS/DESIGN: We will use a mixed methods approach with a theoretical framework derived from the UK Medical Research Council's' guidance on process evaluations. It will include the following: (1) evaluating how key aspects of the intervention will be delivered, which will be important to scale the intervention in real world populations; (2) characterising the contextual issues, which may shape the delivery and the impact of the intervention in different countries; and (3) investigating possible causal mechanisms through analyses of potential moderators and mediators. To avoid bias, we will analyse the process data before the analysis of the main effectiveness outcomes. DISCUSSION: This evaluation will provide insight into how the complex SENSE-Cog SI will be tailored, enacted and received across the different European contexts, all of which have unique health and social care economies. The findings will provide insight into the causal mechanisms effecting change, and will determine whether we should implement the intervention, if effective, on a wider scale for PwD and concurrent sensory impairment. TRIAL REGISTRATION: ISRCTN, ISRCTN17056211. Registered on 19 February 2018.

Impact of an intervention to support hearing and vision in dementia: The SENSE-Cog Field Trial.

OBJECTIVES: Hearing, vision, and cognitive impairment commonly co-occur in older adults. Improving sensory function may positively impact outcomes in people with dementia (PwD). We developed a "sensory intervention" (SI) to support hearing and vision in PwD. Here, we report the findings of an international open-label field trial, and nested case series, to explore the impact of the SI on dementia-related outcomes. METHODS: This was a home-based trial conducted in France, England, and Cyprus. Participants were people with mild-to-moderate dementia and hearing and/or vision impairment (n = 19) and their study partners (unpaid carers; n = 19). The "basic" SI included a hearing and vision assessment and provision of glasses and/or hearing aids. A subsample received the "extended" SI with additional weekly visits from a sensory support therapist (SST). Exploratory analyses of dementia-related, health utility and resource utilisation outcomes were performed. RESULTS: Quality of life (QoL) and sensory functional ability improved. Change in QoL exceeded the threshold for a minimum clinically important difference. There was a modest improvement (in absolute terms) post intervention in behavioural disturbance, self-efficacy, and relationship satisfaction. Study partner time assisting instrumental activities of daily living (iADL) and supervision decreased by about 22 and 38 hours per month, respectively, although time for personal ADL support increased. Qualitative data supported effectiveness of the intervention: PwD were more socially engaged, less isolated, less dependent on study partners, and had improved functional ability and communication. CONCLUSIONS: These findings support the need for a definitive randomised controlled trial (RCT) to evaluate the effectiveness of the intervention.

Feasibility of an Intervention to Support Hearing and Vision in Dementia: The SENSE-Cog Field Trial.

OBJECTIVES: People with dementia (PwD) frequently experience hearing and vision impairment that is underrecognized and undertreated, resulting in reduced quality of life. Managing these impairments may be an important strategy to improve outcomes in PwD. Our objective was to field-trial a multifaceted sensory intervention (SI) to enhance hearing and vision in PwD. DESIGN: An international single-arm open-label feasibility, acceptability, and tolerability study. SETTING: Home-based setting in the United Kingdom, France, and Cyprus. PARTICIPANTS: Adults aged 60 years and older with mild-to-moderate dementia and uncorrected or suboptimally corrected hearing and/or vision impairment, and their study partners (n = 19 dyads). INTERVENTION: A sensory intervention (SI), comprising assessment of hearing and vision, fitting of corrective devices (glasses, hearing aids), and home-based support from a sensory support therapist for device adherence and maintenance, communication training, referral to support services, environmental sensory modification, and optimization of social inclusion. MEASUREMENTS: Ratings of study procedure feasibility, and intervention acceptability/tolerability, ascertained through questionnaires, participant diaries, therapist logbooks, and semistructured interviews. RESULTS: We successfully delivered all intervention components, and these were received and enacted as intended in all those who completed the intervention. No serious adverse events were reported. Acceptability (ie, understanding, motivation, sense of achievement) and tolerability (ie, effort, fatigue) ratings of the intervention were within a priori target ranges. We met recruitment and retention (93.8%) targets in two of the three sites. Participants completed more than 95% of diary entries, representing minimal missing data. Delays in the logistics circuit for the assessment and delivery of hearing aids and glasses were identified, requiring modification. The need for minor modifications to some outcome measures and the inclusion criteria were identified. CONCLUSION: This is the first study combining home-based hearing and vision remediation in PwD. The positive feasibility, acceptability, and tolerability findings suggest that a full-scale efficacy trial, with certain modifications, is achievable.

Individualised sensory intervention to improve quality of life in people with dementia and their companions (SENSE-Cog trial): study protocol for a randomised controlled trial.

BACKGROUND: Hearing and vision impairments are highly prevalent in people with dementia and may have a negative impact on quality of life and other dementia-related outcomes. Intervening to optimise sensory impairment and support sensory function may be a means of improving dementia-related outcomes. The SENSE-Cog trial will test whether a home-based multi-part sensory intervention is effective in improving quality of life and other key outcomes in people with dementia and hearing or vision problems (or both) and their companions. METHODS: This is an European, multi-centre, observer-blind, pragmatic, randomised controlled trial. Three hundred fifty four people with dementia and hearing or vision impairment (or both) and their companions will be randomly assigned to receive either "care as usual" or a multi-component sensory intervention including assessment and correction of hearing or vision impairments (or both), home-based (maximum 10 visits over 18 weeks), therapist-delivered sensory support (that is, adherence to devices; improving the sensory environment (that is, lighting), communication training, and sign-posting to other support agencies). Change from baseline to intervention end (18 weeks) and post-intervention (36 weeks) will be compared between the two arms in the following outcomes: quality of life (primary endpoint), sensory and cognitive functional ability, relationships, mental well-being, health resource utilisation and cost-effectiveness. DISCUSSION: This is one of two articles outlining the SENSE-Cog trial. Here, we describe the protocol for the effectiveness of the SENSE-Cog intervention. A parallel and complementary process evaluation will be described elsewhere. If the SENSE-Cog trial demonstrates that the sensory intervention improves outcomes in dementia, we will make a toolkit of training materials, resources and information available to health and social care providers to implement the intervention in routine practice. This will be a significant contribution to the therapeutic management of people with dementia and sensory impairment. TRIAL REGISTRATION: ISRCTN (Trial ID: ISRCTN17056211 ) on 19 February 2018.

Improving hearing and vision in dementia: protocol for a field trial of a new intervention.

INTRODUCTION: Quality of life and other key outcomes may be improved by optimising hearing and vision function in people living with dementia. To date, there is limited research assessing the efficacy of interventions aimed at improving hearing and vision in people with dementia. Here, we outline a protocol to field test a newly developed home-based intervention, designed to optimise sensory functioning in people with dementia in three European sites. The results of this study will inform the design and conduct of a full-scale randomised controlled trial (RCT) in five European sites. METHODS AND ANALYSIS: In this multisite, single arm, open label, feasibility study, participants with dementia (n=24) will be assessed for hearing and vision impairments and be prescribed a hearing aid and/or glasses. Each participant will have a study partner ('dyads'). A subset of dyads will receive 'sensory support' from a 'sensory support therapist', comprising home visits over 12 weeks. The therapist will offer the following intervention: adherence support for corrective devices; adaptations to the home environment to facilitate sensory function; communication training; and referral to community-based support services. The primary outcomes will be process measures assessing the feasibility, tolerability and acceptability of: (1) the intervention components; (2) the method of implementation of the intervention and (3) the study procedures, including outcome assessment measures. Quantitative data will be collected at baseline and follow-up. Qualitative data using semistructured interviews will be collected postintervention and weekly, using participant diaries. Finally, we will explore a model of cost-effectiveness to apply in the subsequent full-scale trial. This feasibility study is a necessary step in the development of a complex, individualised, psychosocial intervention. The data gathered will allow logistical and theoretical processes to be refined in preparation for a full-scale RCT. ETHICS AND DISSEMINATION: Ethical approval was obtained in all three participating countries. Results of the field trial will be submitted for publication in a peer-reviewed journal.

Functional outcomes of adolescents with a history of specific language impairment (SLI) with and without autistic symptomatology.

This study investigates whether the level of language ability and presence of autistic symptomatology in adolescents with a history of SLI is associated with differences in the pattern of difficulties across a number of areas of later functioning. Fifty-two adolescents with a history of SLI participated. At age 14, 26 participants had a history of SLI but no autistic symptomatology and 26 had a history of SLI and autistic symptomatology. At age 16, outcomes were assessed in the areas of friendships, independence, academic achievement, emotional health and early work experience for both subgroups and for 85 typically developing peers. Autistic symptomatology was a strong predictor of outcomes in friendships, independence and early work experience whilst language was a strong predictor of academic achievement. No significant associations were found for later emotional health.

The PTT-20: UK normative data for 5- to 11-year-olds on a 20-item past-tense task.

BACKGROUND: Grammatical morphology, particularly the use of the past tense in English, has been identified as a behavioural marker for specific language impairment. However, there is a dearth of instruments that assess key verb features, are short and easy to administer for clinical use, and have normative data for the UK population. AIMS: The present study aimed to develop a short version of a past-tense task (named the PTT-20) and to provide UK normative data for a large control sample of primary school-age children. METHODS & PROCEDURES: The task consisted of 20 items taken from a well-known 52-item task developed by Marchman, Wulfeck, and Ellis Weismer in 1999, retaining the key features and variety of verbs of the original design. It was administered to 424 typically developing children aged 5;0 to 11;6 years. OUTCOMES & RESULTS: The short version reduced administration time by two-thirds to around 5-8 minutes. Normative data revealed developmental progression in performance throughout the primary school years, with the task exhibiting ceiling effects in 29% of children by age 11 years. Expected and impaired performance indicators are presented by age band, that is, 5, 6, 7, 8, 9, 10, and 11 years. Comparisons between identified children with specific language impairment and typically developing children revealed significant differences in performance. The PTT-20 correlated highly with the full 52-item task and had good internal consistency. CONCLUSIONS & IMPLICATIONS: The PTT-20 can be a useful tool in the identification and assessment of young school-age children with suspected language difficulties. It can also be used in research and practice as a benchmark against which to compare the ability of children with identified language impairments.

Language and social factors in the use of cell phone technology by adolescents with and without specific language impairment (SLI).

PURPOSE: This study aimed to compare cell phone use (both oral and text-based) by adolescents with and without specific language impairment (SLI) and examine the extent to which language and social factors affect frequency of use. METHOD: Both interview and diary methods were used to compare oral and text-based communication using cell phones by 17-year-olds: 52 adolescents with SLI and 52 typically developing (TD) peers. RESULTS: Overall, adolescents with SLI are motivated users of mobile technology, and they engage with both oral uses (phoning) and text-based uses (text messaging). However, adolescents with SLI do not exchange text messages as often as their TD peers. Social rather than language factors are associated with frequency of cell phone use in adolescence. CONCLUSIONS: These findings indicate that social difficulties restrict text-based uses of cell phones by adolescents with SLI, which can in turn reduce the opportunities that these adolescents have to develop social networks and make arrangements to engage in peer social interaction.

Educational and interpersonal uses of home computers by adolescents with and without specific language impairment.

Many uses of new media entail processing language content, yet little is known about the relationship between language ability and media use in young people. This study compares educational versus interpersonal uses of home computers in adolescents with and without a history of specific language impairment (SLI). Participants were 55 17-year-olds with SLI and 72 typically developing peers. Measures of frequency and ease of computer use were obtained as well as assessments of participants' psycholinguistic skills. Results showed a strong preference for interpersonal computer use in both groups. Virtually all participants engaged with interpersonal new media, finding them relatively easy to use. In contrast, one third of adolescents with SLI did not use educational applications during a typical week. Regression analyses revealed that lower frequency of educational use was associated with poorer language and literacy skills. However, in adolescents with SLI, this association was mediated by perceived ease of use. The findings show that language ability contributes to new media use and that adolescents with SLI are at a greater risk of low levels of engagement with educational technology.

CMIP and ATP2C2 modulate phonological short-term memory in language impairment.

Specific language impairment (SLI) is a common developmental disorder characterized by difficulties in language acquisition despite otherwise normal development and in the absence of any obvious explanatory factors. We performed a high-density screen of SLI1, a region of chromosome 16q that shows highly significant and consistent linkage to nonword repetition, a measure of phonological short-term memory that is commonly impaired in SLI. Using two independent language-impaired samples, one family-based (211 families) and another selected from a population cohort on the basis of extreme language measures (490 cases), we detected association to two genes in the SLI1 region: that encoding c-maf-inducing protein (CMIP, minP = 5.5 x 10(-7) at rs6564903) and that encoding calcium-transporting ATPase, type2C, member2 (ATP2C2, minP = 2.0 x 10(-5) at rs11860694). Regression modeling indicated that each of these loci exerts an independent effect upon nonword repetition ability. Despite the consistent findings in language-impaired samples, investigation in a large unselected cohort (n = 3612) did not detect association. We therefore propose that variants in CMIP and ATP2C2 act to modulate phonological short-term memory primarily in the context of language impairment. As such, this investigation supports the hypothesis that some causes of language impairment are distinct from factors that influence normal language variation. This work therefore implicates CMIP and ATP2C2 in the etiology of SLI and provides molecular evidence for the importance of phonological short-term memory in language acquisition.

Loss of language in early development of autism and specific language impairment.

BACKGROUND: Several authors have highlighted areas of overlap in symptoms and impairment among children with autism spectrum disorder (ASD) and children with specific language impairment (SLI). By contrast, loss of language and broadly defined regression have been reported as relatively specific to autism. We compare the incidence of language loss and language progression of children with autism and SLI. METHODS: We used two complementary studies: the Special Needs and Autism Project (SNAP) and the Manchester Language Study (MLS) involving children with SLI. This yielded a combined sample of 368 children (305 males and 63 females) assessed in late childhood for autism, history of language loss, epilepsy, language abilities and nonverbal IQ. RESULTS: language loss occurred in just 1% of children with SLI but in 15% of children classified as having autism or autism spectrum disorder. Loss was more common among children with autism rather than milder ASD and is much less frequently reported when language development is delayed. For children who lost language skills before their first phrases, the phrased speech milestone was postponed but long-term language skills were not significantly lower than children with autism but without loss. For the few who experienced language loss after acquiring phrased speech, subsequent cognitive performance is more uncertain. CONCLUSIONS: Language loss is highly specific to ASD. The underlying developmental abnormality may be more prevalent than raw data might suggest, its possible presence being hidden for children whose language development is delayed.

Specific language impairment and school outcomes. II: Educational context, student satisfaction, and post-compulsory progress.

BACKGROUND: This investigation is the second paper of a companion set reporting the outcomes of secondary schooling for young people who have been participating in the Manchester Language Study. AIMS: To examine the school context of educational results at 16 years of age and to provide information on the adolescents' post-16 activities. METHODS & PROCEDURES: A total of 120 adolescents with a history of specific language impairment (SLI) and 121 adolescents with typical development (TD) in their final year of compulsory secondary schooling (mean age = 17;4 years) participated in the study. Data on educational placement, special education support and provision of statement of special educational needs (SEN) were collected, along with the provision of access arrangements during examinations. Adolescents were interviewed about their levels of expectation and satisfaction with their examination results and their subsequent post-16 activities. OUTCOMES & RESULTS: Only a small proportion of adolescents attended special units/schools throughout their secondary schooling; a larger proportion consistently attended mainstream schools. Those in receipt of a statement of SEN performed more poorly in their examinations than those without a statement. Around 60% of the adolescents with SLI were provided with some type of access arrangements during their core examinations. The majority (88%) of adolescents with SLI reported that they were satisfied with their educational outcomes. Most adolescents with SLI (91%), regardless of school placement at 16 years, remained in education post-16, with the majority in college settings. CONCLUSIONS: Adolescents with a history of SLI have continued difficulties throughout secondary schooling, with three-quarters of the sample receiving some form of special education in a variety of settings. Educational attainment varied across different groups of adolescents but was consistently poorer than the attainment of typically developing peers. Young people with SLI in the 2000s appear to have more opportunities to remain in education post-16 than they did in the 1990s.

Specific language impairment and school outcomes. I: identifying and explaining variability at the end of compulsory education.

BACKGROUND: This investigation reports the results of national educational examinations in secondary schooling for young people who have been participating in the Manchester Language Study. AIMS: The emphasis of the study is on furthering understanding of educational outcomes at the end of compulsory education. METHODS & PROCEDURES: A total of 120 adolescents with a history of specific language impairment (SLI) and 121 adolescents with typical development (TD) who were in their final year of compulsory secondary schooling (mean age = 17;4 years) participated. National educational examination results throughout secondary schooling were collected along with a range of psycholinguistic skills from 11 to 16/17 years. OUTCOMES & RESULTS: Forty-four per cent of young people with SLI obtained at least one of the expected qualifications at the end of secondary education, indicating some improvements compared with reports on earlier cohorts. Regression analyses revealed that literacy and language skills were predictive of educational attainment after controlling for IQ and maternal education. Nearly one-quarter of the sample of adolescents with SLI was not entered for any examinations at the end of compulsory education. A very strong association between earlier patterns of entry for examinations and patterns of examination entry at school leaving age was found. CONCLUSIONS: In addition to performance IQ, concurrent and early literacy and language skills have significant effects on the academic attainments of young people with a history of SLI. The transition from primary to secondary schooling is a crucial time for assessment and evaluation of individual children's needs and levels of support required.

The prevalence of autistic spectrum disorders in adolescents with a history of specific language impairment (SLI).

BACKGROUND: Traditionally, autism and specific language impairment (SLI) have been regarded as distinct disorders but, more recently, evidence has been put forward for a closer link between them: a common set of language problems, in particular receptive language difficulties and the existence of intermediate cases including pragmatic language impairment. The present study aimed to examine the prevalence of autism spectrum disorders in a large sample of adolescents with a history of SLI. METHOD: The presence of autism spectrum disorders was examined in seventy-six 14-year-olds with a confirmed history of SLI. A variety of instruments were employed, including the Autism Diagnostic Interview-Revised (ADI-R), the Autism Diagnostic Observation Schedule (ADOS) and the Family History Interview (FHI). RESULTS: The prevalence of autism spectrum disorders in young people with SLI was found to be 3.9%, about 10 times what would be expected from the general population. In addition, a much larger number of young people with a history of SLI showed only some autism spectrum symptoms or showed them in a mild form. CONCLUSIONS: Young people with SLI have an increased risk of autism. The magnitude of this risk is considerable. In addition, a larger proportion (a quarter of individuals) present with a number of behaviours consistent with autism spectrum disorders.

Estimating familial loading in SLI: a comparison of direct assessment versus parental interview.

PURPOSE: Two approaches commonly used for estimating prevalence of language disorders in families were compared. The 1st involved examining a subset of language items from an investigator-based interview used to record parental information on the language and literacy difficulties in relatives. The 2nd was the direct assessment of ability in immediate family using a battery of standardized verbal ability, language, and literacy assessments. METHOD: Using these 2 methods, the prevalence of language and literacy disorders was investigated in the immediate family (n=271) of 93 children with a history of SLI (mean age 13;11 years). RESULTS: The overall proportion of relatives with reported language or literacy difficulty was similar for both methods (34.5% for reported difficulties compared with 35% on direct assessment). The present study further explored maternal, paternal, and sibling prevalence rates and strength of agreement between parental interview and direct assessment. When a low cutoff score was used, good agreement (of true negatives and true positives) for reading and spelling difficulties and expressive language between the 2 types of case identification method was found. CONCLUSIONS: Parents can be effective identifiers when the impairment is severe (below 2 SDs from the population mean). Poor agreement was observed between report and assessment of receptive language difficulties.

Different school placements following language unit attendance: which factors affect language outcome?

The study compared the outcomes of two groups of children who were attending language unit provision at 7 years of age. Of 242 children in the original study, 62 (28%) transferred to mainstream school placements at age 8 years. These children were then closely matched to children still attending language unit provision at this age using measures of non-verbal IQ, expression and comprehension. These two groups of children were compared on outcome at 11 years in the areas of language skill, non-verbal IQ and social behaviour. Teacher/speech-language therapist opinions of placement were also examined as factors affecting outcome. Results show that children who moved to mainstream provision at 8 years were more likely to be attending mainstream at 11 years, although the majority received extra support. No further differences were evident in outcome according to placement type. However, there was a main effect of teacher/therapist opinion on outcome--children whose teachers were not entirely happy with the 8-year placement performed more poorly at 11 years on language measures. There were no differences on any other measures. The findings suggest that follow-on placements for children attending language units need to be more closely in line with teacher's opinions and that more flexibility needs to be evident in school placement policy in order that appropriate educational settings can be arranged.