Chryssoula Thodi, Associate Professor of Audiology, European University Cyprus
On behalf of Iracema Leroi1, Ines Himmelsbach2, Lucas Wolski2, Jenna Littlejohn3, Francine Jury1, Angela Parker4, Anna Pavlina Charalambous5, Piers Dawes3, Fofi Constantinidou5, and the SENSE Cog Expert Reference Group
1 Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, M13 9PL, UK; 2 Institute of Applied Research, Development and Further Education, Catholic University of Freiburg, 79104 Freiburg, Germany; 3 Manchester Centre for Audiology and Deafness, University of Manchester, Manchester, M139PL, UK; 4 Greater Manchester NIHR Clinical Research Network, Manchester University NHS Foundation Trust, 2nd Floor City Labs, Nelson Steer, Manchester M13 9NQ, UK; 5 Department of Psychology & Center for Applied Neuroscience, University of Cyprus, Kallipoleos 75, Nicosia 1678, Cyprus
Hearing and vision impairments are among the most common and disabling comorbidities in dementia, yet there is limited awareness, understanding and knowledge about how best to detect and manage them when they coexist. Οver 70% of people with dementia attending a community memory clinic reported that they required specific support for hearing problems, and those with higher levels of hearing loss, vision impairment and depression rated their quality of life worse than those with less severe difficulties in these areas . Evidence supporting hearing and vision loss as risk factors for cognitive decline and even dementia is rapidly growing [2,3]. There is a limited awareness, understanding and expertise amongst the respective professionals regarding the overlap of these conditions and the approach to assessment and intervention [8,9]. This investigation aimed to: (1) explore the gaps in understanding, assessment and service provision; (2) elicit potential solutions; (3) ascertain the awareness, attitudes, and knowledge of the assessment and support of individuals with such comorbidity; and (4) determine current practice regarding the assessment of the different domains in addition to the index domain. The overall goal was to inform the adaptation of current clinical assessment tools in the domains of hearing, vision and cognition  as well as to guide the development of a complex intervention to support hearing and vision functioning in people with dementia [5,10,11]. This study is part of the EU funded SENSE-Cog Programme which aims to understand and manage the overlap of aging-related hearing, vision and cognitive impairment (www.sense-cog.eu).
Part 1: International Expert Reference Group (ERG)
Participants: Seventeen clinical and academic experts, selected for their clinical or research expertise in the area, attended a two day meeting: audiologists (n =3); psychologists (n=3); hearing scientist (n =1); dementia clinicians (n=4); optician (n=1); vision scientist (n=1); social gerontologist specialising in older adult vision health (n=1); and post-doctoral fellows working across disciplines (n=2).
Data collection: The Experts participated in guided group discussions of prototype clinical vignettes, one from each domain (Cognition, Hearing, Vision). Facilitators prompted discussions by using four anchor questions:
- ‘What are the steps in your standard assessment of [domain specific] impairment?’
- ‘What problems might you encounter if the person has concurrent hearing/vision/cognitive problems?’
- ‘How might your standard assessment be adapted in the case of concurrent problems?’
- ‘What home-based interventions might improve the lives of people living with hearing, vision and cognitive difficulties?’
Scribes and facilitators captured the output using field notes and audio recording and kept the participants on track with the guided questions.
Part 2: Professionals’ Anonymised Survey
A national UK survey collected completed datasets from 653 clinicians from: dementia care (344); audiology (142), and optometry (167). The survey instrument was based on the output of the ERG and modified by input of a group of service users. Draft versions were piloted and adjusted by feedback from six professionals (two from each domain). There were four versions of the survey minimally adapted to take account of the specifics of each group of professionals. The study was approved by our local ethical review board.
Part 1: International Expert Reference Group
Data were qualitatively analysed to answer the research question: ‘What are the gaps in understanding and service provision for people with dementia and hearing and/or vision impairment, and what possible solutions might there be?’ All data were integrated to the Qualitative Analysis Software MAXQDA. Codes consisted of: (1) ‘perceived gaps’, to capture shortcomings related to knowledge and/or availability of service provision for people with dementia and hearing and/or vision problems; and (2) ‘proffered solutions’, which related to any potential solution or strategy to address any of the perceived gaps identified in (1).
Part 2: Professionals’ Anonymised Survey
The focus of our analysis was descriptive and pertained to the awareness, attitudes, knowledge and practice of the professional groups representing the three different domains. Missing data in terms of individual item response was accounted for by pairwise deletion.
Part 1: International Expert Reference Group
Code 1: Perceived gaps in the assessment and intervention of individuals with overlapping impairment:
The consensus was that lack of adapted assessments to account for concurrent deficits was the single most important gap. The discussion highlighted the loss of validity of standard assessment tools when administered to people with dual or triple impairment. The most obvious problem was that of cognitive tests which rely heavily on hearing and vision for completion. The widely used Mini-mental State Exam (MMSE) was considered inappropriate for individuals with hearing and/or vision impairment. Finally, all agreed that comorbidity significantly increased the impact of the impairments on quality of life.
Code 2: Proffered solutions regarding the gaps in assessment and care:
Solutions should be seen from the perspective of ‘interdisciplinarity’. Specific examples included hearing and vision specialists undertaking adapted cognitive screens and memory specialists doing brief hearing and vision assessments. All health care workers in the broader field of older adult care should have heightened awareness of the added risks and burdens resulting from the overlapping impairments.
Existing tools should be adapted to account for hearing, vision and cognitive comorbidity; specific suggestions included: (1) incorporating brief visual and/or hearing related assessments in memory clinics; (2) adding screening or ‘probe’ questions regarding cognitive function to hearing and/or vision assessments in audiology or optometry clinics; (3) focussing more on functional ability in all three clinical settings/ domains; (4) ensuring that patients bring and wear best corrected hearing aids and glasses during cognitive assessments in memory clinics; and (5) prioritising collateral information on functional ability in all three domains (from family, carers); (6) taking information from peers and family and integrating ‘probe questions’ related to vision and hearing in memory assessments.
The notion of ‘individualization’ and ‘flexibility’ of approach was considered paramount. The person-centred approach should address the patient’s home setting and the social networks to optimise the outcomes of any intervention. A specific example was that a professional should ensure that an individual has the visual, cognitive and perceptual ability to handle and use a small hearing aid correctly. The environment-centred approaches included the need for home-based ‘environmental’ support, which could involve installing auditory and visual adaptations to the television and high lux lights for close work, managing light versus glare, designating a ‘hearing friendly’ room (i.e. with good acoustics due to soft furnishings etc.), installing ‘visible’ doorbells, and other pragmatic solutions. It was noted that the earlier such assistive devices as hearing aids were offered, the better (i.e. in the mild cognitive impairment or early dementia stage) since people in the more advanced stages of dementia might have more difficulties accepting or using a hearing aid.
Part 2: Professionals’ Anonymised Survey
The majority of respondents were dementia care professionals (n=344, 52.7%; doctors, nurses, allied health professionals), followed by vision professionals (n=167, 25.6%) and hearing professionals (n=97, 21.7%). The respondent sample was representative, consisting of 453 females (69.4%) and 200 males (30.6%) at varying career stages. Details of the survey responses are outlined in Figures 1 to 3. In general, professionals across all domains reported awareness of the overlaps between cognitive, hearing and visual impairment (Fig. 1A). When answering how often they asked about impairment in the alternative domains, a high proportion of dementia and hearing professionals reported commonly asking (90% and 87% respectively), but the proportion of vision professionals asking about cognitive impairment was notably lower at only 45% (Fig. 3A). Despite this, Figure 1B shows the proportion in all three groups reporting awareness of brief screening assessments for use in conjunction with their primary assessment was relatively low (mean= 42.13%, SD=6.66). Few professionals felt they had sufficient training to administer the alternative screen (Fig. 2B), adequate knowledge of how to use the results of the additional assessment (Fig. 2A), and enough awareness of referral pathways for a positive screen (Fig. 1C).
Very few non-dementia clinicians (16%) reported administering cognitive assessments in hearing and vision clinics (Fig. 3B). Approximately half of the doctors in the ‘dementia professionals’ group reported administering some type of hearing or vision screening assessment, (46% of the hearing screen and 19% of the vision screens) whereas the proportion of non-doctor dementia professionals was considerably lower at 8%. Finally, over 90% within each group agreed that guidelines would be useful (Fig. 2C) and that patients would find a brief screening assessment acceptable as part of their primary assessment (Fig. 3C).
Figure 1: Ppercentage of each group in agreement to the statements about ‘Awareness’ of (A) the overlap between dementia, hearing & vision impairment, (B) brief assessments for use in conjunction with primary assessment and (C) referral/care pathways for patients who have positive screens.
Figure 2: Percentage of each group in agreement to the statements about ‘Knowledge, skills and attitudes’ around (A) how to use the results of the additional brief assessment in care management, (B) training/expertise in administering a brief screening assessment and (C) perceived usefulness of guidelines on brief assessments to use in addition to the usual assessment.
Figure 3: Percentage of each group in agreement to the statements about ‘Professionals’ clinical practice and perceptions of patients view’, regarding (A) asking about impairment in cognition/hearing/vision (B) administering a brief cognitive/hearing/vision assessment in addition to the main assessment and (C) perceived acceptability of a brief screening assessment in addition to the main assessment.
To our knowledge, this is the first study to investigate the perspectives of European and North American professionals representing all three domains of hearing, vision and dementia care, regarding the assessment and care needs of individuals with dual- and triple impairments. The qualitative analysis from the ERG revealed three main gaps for people with concurrent hearing, vision and cognitive impairment: (1) a lack of standardized, sensitive clinical assessment tools and evidence-based interventions; (2) poor interdisciplinary communication and care pathways; and (3) a lack of evidence-based interventions to address these needs. Agreed solutions centred on the need for flexible, individualised approaches, based on an interdisciplinary approach. Results from the subsequent survey revealed data to support these findings, in that in spite of being aware of the overlaps among the comorbidities, screening is not routinely undertaken, professionals do not feel confident in interpreting the screening assessments, and understanding of how positive screens may impact on subsequent care is lacking. These findings highlight the urgent need to implement changes in current practice and to provide training and guidelines regarding assessment and care.
The need to develop brief, sensitive assessment instruments for sensory function and cognition is consistent with the literature [9,14]. Cognitive assessments should be appropriately adapted and fully validated in people with dual and triple impairments . Hearing and vision assessment procedures and protocols need to be modified to consider cognitive loss and made available across disciplines to guide referral for further specialized assessment, as previously recommended .
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