Dr Emma Hooper

BACKGROUND: The effect of hearing and vision difficulties on the risk of developing dementia and worsening outcomes in people already living with dementia is well established. We evaluated the clinical impact of a hearing and vision rehabilitation and support programme on quality of life in people with mild-to-moderate dementia and concurrent sensory difficulties. METHODS: We conducted a parallel-group, multicentre, observer-blind, superiority randomised controlled trial in seven older adult clinics in five European countries (Cyprus, France, Greece, Ireland, and the UK). People with mild-to-moderate dementia with adult-acquired hearing difficulties, vision difficulties, or both were randomly assigned (1:1) along with their care partner to an 18-week home-basedsensory support intervention (SSI) of tailored hearing and vision rehabilitation and support, or to care as usual. Randomisation was blocked (block size of four, six, or eight) and stratified by country, with allocation assigned via a remote web-based system. The SSI included: full hearing assessment, vision assessment, or both; fitting of hearing aids, glasses, or other sensory aids; and home-based support from a sensory support therapist to assist adherence and uptake of sensory aids, foster social networking, and optimise the home sensory environment. Care as usual involved no additional intervention beyond services normally available to people with dementia at the respective sites. The primary outcome was health-related quality of life (Dementia Quality of Life Instrument [DEMQoL]) score at 36 weeks, reported as an adjusted mean difference. Analyses were done according to the intention-to-treat principle. This trial is registered with the ISRCTN Registry, ISRCTN17056211. FINDINGS: Between May 4, 2018, and May 6, 2021, 252 people with mild-to-moderate dementia were randomly assigned, of whom 251 (n=126 in the SSI group and n=125 in the care as usual group) were included in the analysis. The mean age of participants was 79·6 years (SD 5·8), and 132 (53%) were women. After a median follow-up time of 37·7 weeks (IQR 36·2-39·0), the mean DEMQoL score was 92·8 (SD 15·2) in the SSI group and 92·8 (14·0) in the care as usual group (adjusted difference 0·18, 95% CI -2·13 to 2·30, p=0·87). Among 114 adverse events reported for 56 (44%) participants in the SSI group, ten events in nine participants were related or possibly related to the intervention (medical device pain or discomfort n=6, ear pain n=1, scratch to the ear n=1, sore eye n=1, redness n=1; all of grade 1). Serious adverse events were reported for 25 (20%) participants in the SSI group and 16 (13%) in the care as usual group. Six (5%) participants in the SSI group and five (4%) in the care as usual group died. None of the serious adverse events or deaths were related to the study intervention or procedures. INTERPRETATION: This study showed no improvement in quality in life in participants who received the intervention in the longer term. Sensory difficulties are common in people with dementia and interventions aimed at improving sensory-cognitive health should be explored further. FUNDING: EU Horizon 2020.

Objectives To identify correlates of hearing aid use in people with dementia and age-related hearing loss. Methods Bivariate and multivariate logistic regression analyses of predictor variables from 239 participants with dementia and hearing loss in the European SENSE-Cog Randomized Controlled Trial (Cyprus, England, France, Greece, and Ireland). Results In multivariate analysis, four variables were significantly associated with hearing aid use: greater self-perceived hearing difficulties (OR 2.61 [CI 1.04−6.55]), lower hearing acuity (OR .39 [CI .2−.56]), higher cognitive ability (OR 1.19 [CI 1.08−1.31]), and country of residence. Participants in England had significantly increased odds of use compared to Cyprus (OR .36 [CI .14−.96]), France (OR .12 [CI .04−.34]) or Ireland (OR .05 [CI .01−.56]) but not Greece (OR 1.13 [CI .42–3.00]). Conclusions Adapting interventions to account for cognitive ability, country of residence, self-perceived hearing difficulties, and hearing acuity may support hearing aid use in people with dementia.

Background

Assistive technology and telecare have been promoted to manage the risks associated with independent living for people with dementia, but there is limited evidence of their effectiveness.

Hearing loss is highly prevalent in dementia; however, people with dementia are less likely to use hearing aids consistently than people with intact cognition are. This qualitative study is the first of its kind to explore factors that influence hearing aid use from the perspective of community-living people with mild to moderate dementia and their care partners. Eleven UK-based dyads from the European SENSE-Cog Randomized Controlled Trial of a sensory intervention for people with dementia completed semi-structured interviews based on the Theoretical Domains Framework (TDF). Our findings suggest that the TDF domains environmental context and resources, behavioral regulation, reinforcement, and social influences are of greatest relevance to hearing aid use in dementia. Within these domains, we identified a range of factors that may influence the target behavior of hearing aid use. The findings suggest that adoption of multifaceted, flexible intervention approaches may support hearing aid use in dementia.

This study examined the bidirectional associations among maternal depressive symptoms, child social skills, and child executive function between 3 (T1) and 4 years (T2) of child age. Participants included 1,292 families and children (49% girls; 41% Black) from the Family Life Project, living in rural, low-income areas of the United States. Using an autoregressive and cross-lagged latent change score model, we found significant bidirectional associations between maternal depressive symptoms and child social skills, such that lower maternal depressive symptoms at T1 predicted a greater increase in child social skills from T1 to T2 and higher social skills at T1 predicted a greater decline in maternal depressive symptoms from T1 to T2. In addition, we found bidirectional associations between child social skills and executive function. Specifically, higher social skills predicted a greater increase in executive function from T1 to T2 and higher executive function at T1 predicted a smaller increase in social skills from T1 to T2. However, we found no evidence for the bidirectional relation between maternal depressive symptoms and child executive function. Our findings support the bidirectional model of child development and suggest that interventions targeting early maternal depression in underserved families may foster the growth of children’s social skills during the preschool years. Additionally, enhancing child social skills may reduce maternal depressive symptoms and boost the growth of child executive function. The results also highlight the interactive nature between the growth of social skills and executive function during early childhood.

OBJECTIVES: To investigate factors that influence hearing aid use according to the Theoretical Domains Framework (TDF). The TDF is a behavioral science framework that aids understanding of factors that influence behavior. DESIGN: Systematic review. SETTING AND PARTICIPANTS: People living in the community with dementia and age-related hearing loss who have air conduction hearing aids. METHODS: Systematic literature review following PRISMA guidelines. We searched for studies in 9 databases, including Ovid MEDLINE, Scopus, and OpenGrey. We undertook an interpretive data synthesis by mapping findings onto the TDF. We assessed confidence in the findings according to the GRADE-CERQual approach. RESULTS: Twelve studies (6 quantitative, 3 qualitative, and 3 mixed methods) were included in the review. The majority of these were rated low-moderate quality. We identified 27 component constructs (facilitators, barriers, or noncorrelates of hearing aid use) nested within the 14 domains of the TDF framework. Our GRADE-CERQual confidence rating was high for 5 findings. These suggest that hearing aid use for people living in the community with dementia and hearing loss is influenced by (1) degree of hearing aid handling proficiency, (2) positive experiential consequences, (3) degree of hearing aid comfort or fit, (4) person-environment interactions, and (5) social reinforcement. CONCLUSIONS AND IMPLICATIONS: Hearing aid interventions should adopt a multifaceted approach that optimizes the capabilities of people with dementia to handle and use hearing aids; addresses or capitalizes on their motivation; and ensures their primary support network is supportive and encouraging of hearing aid use. The findings also emphasize the need for further high-quality research that investigates optimal hearing aid use, influencing factors, and interventions that support hearing aid use.

ABSTRACT. In July 2019, Belo Horizonte hosted an international workshop for 27 junior researchers, whose participants were from Brazil and the United Kingdom. This three-day meeting organized by the Universidade Federal de Minas Gerais and the University of East Anglia addressed challenges in cognitive impairment and dementia, with particular interest in public perceptions, diagnosis and care management. The purpose of this report is to highlight the outcomes of the above-mentioned workshop regarding the topic of public perceptions (part I). Discussions focused on differences and similarities between countries, as well as on identifying main issues that required collaborative and creative solutions. After these group discussions, four core themes emerged: I) cognitive impairment; II) dementia - beyond Alzheimer’s disease; III) prevention; and IV) stigma. National and international initiatives to deal with public misperceptions about cognitive impairment and dementia were discussed.

Background: There are few evidence-based non-pharmacological interventions adapted for people with dementia (PwD) in lower- and middle-income countries (LMIC). Thus, there is value in culturally adapting existing interventions from other settings. One such intervention for PwD involves hearing rehabilitation, which may improve dementia-related outcomes. Objective: To culturally adapt and evaluate the feasibility and acceptability of a multi-faceted hearing support intervention to enhance quality of life in PwD for a LMIC setting, Pakistan. Design: This was a study in three phases: (1) training and capacity building to deliver the study, including Patient and Public Involvement (PPI); (2) cultural adaptation of the intervention; and (3) delivery of a single-group feasibility study with a pre-test post-test design. Setting: Home-based intervention, in two cities of Pakistan. Participants: Adults aged ≥ 60 with mild-moderate dementia and uncorrected or partially corrected hearing impairment, and their study partners (n = 14). Intervention: An adapted hearing support intervention (HSI) comprising a full assessment of hearing function, fitting of hearing aids, and home-based support from a “hearing support practitioner.” Outcomes: Ratings of the feasibility of the study procedures, and acceptability/tolerability of the adapted intervention were ascertained through questionnaires, participant diaries, therapist logbooks and semi-structured interviews. A signal of effectiveness of the intervention was also explored using a battery of dementia-related outcome measures. Results: Following cultural adaptation and capacity building for study conduct and delivery, we successfully implemented all intervention components in most participants, which were well-received and enacted by participant dyads. Acceptability (i.e., understanding, motivation, sense of achievement) and tolerability (i.e., effort, fatigue) ratings and safety of the intervention were within a priori target ranges. Recruitment and retention targets required improvement, due to the COVID-19 pandemic outbreak, as well as the lack of a clear clinical diagnostic pathway for dementia in both sites. Areas for future modification were clearly identified, including: the assessment/delivery logistics circuit; procedures for arranging visits; communication among referring clinicians and the study team. Conclusion: This is the first study in a LMIC of sensory enhancement to improve dementia outcomes. Positive feasibility, acceptability and tolerability findings suggest that a full-scale effectiveness trial, with certain modifications is warranted.

Introduction: Hearing, vision, and cognitive impairment commonly co-occur in older people. However, the rate of recognition and appropriate management of combined hearing and vision impairment in people with dementia impairment is low. The aim of this work was to codevelop internationally relevant, multidisciplinary practice recommendations for professionals involved in the diagnosis, care, and management of older people with these concurrent conditions. Methods: We applied consensus methods with professional and lay expert stakeholders, using an adapted version of the World Health Organization Handbook for Guideline Development. The development involved 4 phases and included: (1) collating existing evidence, (2) filling the gaps in evidence, (3) prioritising evidence, and (4) refining the final list of recommendations. Each phase encompassed various methodologies including a review of existing guidelines within the 3 clinical domains, systematic reviews, qualitative studies, a clinical professional consortium, surveys, and consensus meetings with interdisciplinary domain experts. Results: The task force evaluated an initial list of 26 recommendations, ranking them in the order of priority. A consensus was reached on 15 recommendations, which are classified into 6 domains of “awareness and knowledge,” “recognition and detection,” “evaluation,” “management,” “support,” and “services and policies.” Pragmatic options for implementation for each domain were then developed. Conclusion: This is the first set of international, interdisciplinary practice recommendations that will guide the development of multidisciplinary services and policy to improve the lives of people with dementia and hearing and vision impairment.

Objectives The use of assistive technology and telecare (ATT) has been promoted to manage risks associated with independent living in people with dementia but with little evidence for effectiveness. Methods Participants were randomly assigned to receive an ATT assessment followed by installation of all appropriate ATT devices or limited control of appropriate ATT. The primary outcomes were time to institutionalisation and cost-effectiveness. Key secondary outcomes were number of incidents involving risks to safety, burden and stress in family caregivers and quality of life. Results Participants were assigned to receive full ATT (248 participants) or the limited control (247 participants). After adjusting for baseline imbalance of activities of daily living score, HR for median pre-institutionalisation survival was 0.84; 95% CI, 0.63 to 1.12; P = 0.20. There were no significant differences between arms in health and social care (mean -£909; 95% CI, -£5,336 to £3,345, P = 0.678) and societal costs (mean -£3,545; 95% CI, -£13,914 to £6,581, P = 0.499). ATT group members had reduced participant-rated quality-adjusted life years (QALYs) at 104 weeks (mean − 0.105; 95% CI, −0.204 to −0.007, P = 0.037) but did not differ in QALYs derived from proxy-reported EQ-5D. Discussion Fidelity of the intervention was low in terms of matching ATT assessment, recommendations and installation. This, however, reflects current practice within adult social care in England. Conclusions Time living independently outside a care home was not significantly longer in participants who received full ATT and ATT was not cost-effective. Participants with full ATT attained fewer QALYs based on participant-reported EQ-5D than controls at 104 weeks.

OBJECTIVES: To report the effectiveness of, and barriers and facilitators to, hearing rehabilitation for care home residents with dementia. DESIGN: Systematic review. SETTING AND PARTICIPANTS: Care home residents with dementia and hearing loss. METHODS: No restrictions on publication date or language were set and gray literature was considered. Eligible studies were critically appraised and presented via a narrative review. RESULTS: Sixteen studies, most of low to moderate quality, were identified. Hearing rehabilitation, including hearing devices, communication techniques, and visual aids (eg, flashcards), was reported to improve residents' communication and quality of life and reduce agitation, with improvements in staff knowledge of hearing loss and job satisfaction. Residents' symptoms of dementia presented barriers, for example, losing or not tolerating hearing aids. Low staff prioritization of hearing loss due to time pressures and lack of hearing-related training for staff were further barriers, particularly for residents who required assistance with hearing devices. Adopting a person-centered approach based on residents' capabilities and preferences and involving family members facilitated hearing device use. CONCLUSIONS AND IMPLICATIONS: Residents with dementia can benefit from hearing rehabilitation. Identifying and implementing efficient, individualized hearing rehabilitation is necessary for those with complex cognitive needs. Increased funding and support for the social care sector is required to address systemic issues that pose barriers to hearing rehabilitation, including time pressures, lack of training for staff and access to audiology services for residents.

Abstract

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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.

Dementia caregiving is thought to have a negative impact on health and wellbeing. This critical review of qualitative literature explored the lived experience of familial dementia caregivers from an occupational therapy perspective. The method was informed by systematic review and qualitative research methodologies and was structured within the occupational dimensions framework of doing–being–becoming–belonging. A comprehensive search of major databases was undertaken which identified 484 studies on the topic; 14 met the inclusion criteria and were included in the review. Ten themes emerged within the doing-being-becoming-belonging framework from the analysis of the studies. The occupational participation of caregivers is conveyed within the ‘doing’ domain. Ways in which caregiving impacts upon opportunities for self-nurture are presented within the ‘being’ domain. The ‘becoming’ domain elucidates ways in which caregivers redefine themselves, their values and their priorities through their caregiving role. The ‘belonging’ domain depicts ways in which caregivers’ connections with their care recipient and others are shaped over time. Practice implications for health and social care practitioners who work with familial dementia caregivers are presented in light of the findings.