Identification of eating, drinking and swallowing difficulties for people living with early-stage dementia: A systematic review.

BACKGROUND: The prevalence of dementia is increasing, bringing a range of challenges, such as eating, drinking and swallowing (EDS) difficulties, that are associated with aspiration, which can be fatal. Early identification of EDS difficulty in early-stage dementia could prevent complications, but reliable indicators are needed to help develop pathways to support the diagnosis. Previous reviews of this area require updating. AIMS: To identify reliable and clinically measurable indicators of EDS difficulty used in early-stage dementia. METHODS & PROCEDURES: A systematic search was conducted using common databases (MEDLINE, EMBASE and PsychInfo). Articles reporting indicators of EDS difficulty in early-stage dementia or mild cognitive impairment were included. The reliability of included studies was critically appraised using the risk of bias tools. Study outcomes were narratively reviewed by considering the reliability, clinical measurability and applicability of EDS indicators to early-stage dementia. OUTCOMES & RESULTS: Initial searches returned 2443 articles. After removing duplicates, limiting to English language and human studies, 1589 articles remained. After reviewing titles, 60 abstracts were reviewed, yielding 18 full-text articles. A total of 12 articles were excluded that did not report at least one indicator of EDS difficulty in early-stage dementia, or where the reported association was not strong. Six included studies that reported eight indicators of EDS difficulty in early-stage dementia (four studies including people with Alzheimer's disease). On the balance of measurability, reliability and applicability, the most promising indicators of EDS difficulty were: delayed oral transit, rinsing ability, sarcopenia and polypharmacy. Additional, less reliable and applicable indicators included: always opened lips and non-amnestic mild cognitive impairment, especially in men. The delayed pharyngeal response is subjectively measured when instrumental assessment is not available and the 'candy sucking test' cannot be recommended because there is an inherent choking risk. CONCLUSIONS & IMPLICATIONS: EDS difficulty in early-stage dementia can be highlighted by indicators that could be combined to create enhanced pathways to support the early identification of EDS difficulties for people living with early-stage dementia with a view to preventing complications and facilitating informed discussions regarding wishes in the event of further deterioration. Exploring the experiences of people living with dementia and their families' perspectives on potential indicators of EDS difficulty may add to the existing evidence base. WHAT THIS PAPER ADDS: What is already known on the subject Early identification of EDS difficulty in early-stage dementia may prevent complications, but more reliable and clinically measurable indicators of EDS difficulty are needed to help develop pathways to support diagnosis. What this paper adds to existing knowledge A comprehensive range of studies related to EDS identification in early-stage dementia have been selected and reviewed. Across six included studies, the most promising indicators of EDS difficulty in early-stage dementia included delayed oral transit, poor rinsing ability, presence of sarcopenia and polypharmacy. What are the potential or actual clinical implications of this work? This study could help to develop pathways to support the early identification of EDS difficulties for people living with early-stage dementia with a view to preventing complications and facilitating informed discussions regarding wishes in the event of further deterioration.

Exploring the connection between dementia and eating, drinking and swallowing difficulty: Findings from home-based semi-structured interviews.

BACKGROUND: Eating, drinking and swallowing (EDS) difficulties are important to identify early. Awareness of EDS changes starts with those living with dementia or their family carers. However, little is known about early identification from the perspective of people with dementia. AIM: The aim of this study was to understand the experience of EDS by people living with dementia in their own home. METHODS: Published evidence pertaining to EDS difficulties in dementia was used to inform an online semi-structured interview guide. Four people living with dementia and a third-sector Empowerment Lead were invited to become co-researchers. People living with dementia and their carers were invited to be interviewed. We enquired about their past and present experiences, and future expected changes in EDS, information needs, opinions on early problem identification, and lifestyle modifications following onset of EDS difficulty. Narrative concepts of heroes and villains in their 'stories' were identified. Responses were subjected to framework analysis informed by narrative enquiry. RESULTS: Seven people living with dementia and five family carers were interviewed. The overarching theme was a 'missed connection' between EDS difficulty and dementia. Where EDS difficulties were identified, 'compensatory changes' and a need for 'access to information' were noted. CONCLUSIONS: The connection between potential EDS difficulties and a dementia diagnosis may not be made, even though EDS changes were recognised by people living with dementia and their family carers. This may be explained by behaviours that mask problems or allow individuals to cope or compensate. Reduced awareness may also be due to inadequate access to information and lack of specialist services. If the connection between dementia and EDS difficulty is missed it could further delay access to support services. WHAT THIS PAPER ADDS: What is already known on the subject The prevalence of dementia is increasing and is expected to affect 9% of the population by 2040. EDS difficulties are common in people living with dementia and predispose to poorer outcomes. Better awareness of EDS changes early in the disease process of dementia or at preclinical stages can identify individuals at risk and allow for intervention prior to advanced EDS difficulties developing. What this paper adds to existing knowledge This paper reports the perspective of people living with dementia and family carers and provides insights into experiences of EDS and the challenges faced and identifies commonalities. The connection between potential EDS difficulties and dementia is missed despite various changes reported by both people living with dementia and their family carers, who tend to make compensatory lifestyle changes without support. What are the potential or actual clinical implications of this work? Lack of awareness of the connection between potential EDS difficulties and dementia may arise due to inadequate access to information to support people living with dementia and their family carers. Access to such information is needed and the quality assurance of information from reputable sources is important to people living with dementia. There is a need for greater service user awareness of signs of EDS difficulty and how to access specialist services.

The emerging contribution of speech and language therapists in awake craniotomy: a national survey of their roles, practices and perceptions.

BACKGROUND: Awake craniotomy with electrical stimulation has become the gold standard for tumour resection in eloquent areas of the brain. Patients' speech during the procedure can inform the intervention and evidence for language experts to support the procedure is building. Within the UK a burgeoning speech and language therapist awake craniotomy network has emerged to support this practice. Further evidence is needed to underpin the specific contribution of speech and language therapists working within the awake craniotomy service. AIMS: To investigate and analyse the current practices of speech and language therapists: their role, pre-, intra- and postoperative assessment, and management practice patterns and skill set within awake craniotomy. METHODS & PROCEDURES: Speech and language therapists in the UK, who work in awake craniotomy, were invited to complete an online questionnaire. Participants were recruited via several networks supported by a social media campaign. Data were analysed using a mixed methodology approach including descriptive statistics, summative and conventional content analysis. OUTCOMES & RESULTS: A total of 24 speech and language therapists completed the survey, an unknown proportion of the available population. All four UK countries were represented. The majority were highly specialist clinicians 58% (n = 14) with the remainder clinical leads 25% (n = 6) or specialist clinicians 17% (n = 14). Only 29% (n = 7) had funding for awake craniotomy or had awake craniotomy in their job description. Median experience with awake craniotomy was 3 years. Median estimated contact time per case was 10.3 h. Current intraoperative practice is characterized by a sustained period of real-time, dynamic, informal assessment of speech, language, oromotor and cognitive functions. Respondents described a range of intraoperative clinical deficits that, once detected, are immediately communicated to surgeons. There was evidence of variable and diverse language mapping practices and barriers to the translation of information at multidisciplinary team level. Barriers to participation in awake craniotomy included lack of: standardized validated language mapping methods, funding, standardized training methods and guidance to direct practice. CONCLUSIONS & IMPLICATIONS: The evidence suggests areas of consistent practice patterns in preoperative preparation and intraoperative assessment. However, considerable variability exists within language testing and mapping that would benefit from validation. These speech and language therapists support improved outcomes of awake craniotomy by real-time intraoperative speech, language, oromotor and cognitive assessment, rapid detection of clinical deterioration and immediate communication to surgeons. Further research exploring intraoperative language testing, consistent use of language mapping terminology, and selection of test methods is recommended.