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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.

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.

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.

There is a reported high prevalence of anxiety in people with autism spectrum disorder. This mini review appraises existing research investigating heart rate variability biofeedback to help manage symptoms of anxiety in people with autism spectrum disorder. A thorough search of electronic databases was conducted to find relevant literature. Consultation with experts and a librarian helped develop search terms following the PICO framework. Five databases were searched, and screening was undertaken using Covidence software, with the process outlined in a PRISMA flowchart. The latest review showed positive shortterm effects but there is a need for long-term follow-up. Future investigations should consider device type, training settings, and control interventions. Accurate heart rate variability assessment independent of biofeedback devices is crucial. Additional measures like cortisol assessment and user feedback are recommended for comprehensive evaluation. The findings highlight progress in the evidence base and offer insight to future directions. [ABSTRACT FROM AUTHOR]

Background: Jordanian pregnant women report high prevalence of antenatal depressive symptoms, compared to their counterparts internationally. One potential nonpharmacological intervention is Interpersonal Psychotherapy (IPT), accessed by telephone. Aim: The aim of this study is to compare the depressive symptom level(s) among Jordanian pregnant women who received IPT treatment with those who received routine antenatal care. Methods: A prospective randomized controlled trial design was used. Following ethical approval, a sample of 100 pregnant women (50 in each group) at 24 to 37 weeks gestation, was drawn from one governmental public hospital. Seven sessions (each half an hour) of telephone-based IPT were offered twice weekly to those assigned to the intervention arm: one pretherapy orientation, five intermediates, and one closing session. The Edinburgh Postnatal Depression Scale was administered before and after the intervention. Analysis of covariance was used to detect the intervention effect. The two groups were matched based on demographic and health characteristics. Results: Compared to the control group, pregnant women who received the intervention reported fewer depressive symptoms. Conclusions: Midwives and general nurses should screen all pregnant women for symptoms of depression. The effectiveness of IPT treatment in alleviating depressive symptoms indicates the importance of using such supportive interventions by midwives and general nurses, who are trained in psycho-educational counseling techniques. Moreover, data provided by this study may encourage policymakers to legislate policies that make psychotherapists available and accessible in antenatal care units and ensure that staff have adequate training via continuing education programs to screen for antenatal depressive symptoms. [ABSTRACT FROM AUTHOR]

BackgroundSpeech problems are common in people living with Parkinson disease (PD), limiting communication and ultimately affecting their quality of life. Voice-assisted technology in health and care settings has shown some potential in small-scale studies to address such problems, with a retrospective analysis of user reviews reporting anecdotal communication effects and promising usability features when using this technology for people with a range of disabilities. However, there is a need for research to establish users’ perspectives on the potential contribution of voice-assisted technology for people with PD. ObjectiveThis study aims to explore the attitudes toward the use of voice-assisted technology for people with PD. MethodsA survey was approved for dissemination by a national charity, Parkinson’s UK, to be completed on the web by people living with the condition. The survey elicited respondent demographics, PD features, voice difficulties, digital skill capability, smart technology use, voice-assisted technology ownership and use, confidentiality, and privacy concerns. Data were analyzed using descriptive statistics and summative content analysis of free-text responses. ResultsOf 290 participants, 79.0% (n=229) indicated that they or others had noticed changes in their speech or voice because of the symptoms of their condition. Digital skills and awareness were reported on 11 digital skills such as the ability to find a website you have visited before. Most participants (n=209, 72.1%) reported being able to perform at least 10 of these 11 tasks. Similarly, of 70.7% (n=205) participants who owned a voice-assisted device, most of them (166/205, 80.9%) used it regularly, with 31.3% (52/166) reporting that they used the technology specifically to address the needs associated with their PD. Of these 166 users, 54.8% (n=91) sometimes, rarely, or never had to repeat themselves when using the technology. When asked about speech changes since they started using it, 25% (27/108) of participants noticed having to repeat themselves less and 14.8% (16/108) perceived their speech to be clearer. Of the 290 respondents, 90.7% (n=263) were not concerned, or only slightly concerned, about privacy and confidentiality. ConclusionsHaving been added to the homes of Western society, domestic voice assist devices are now available to assist those with communication problems. People with PD reported a high digital capability, albeit those who responded to a web-based survey. Most people have embraced voice-assisted technology, find it helpful and usable, and some have found benefit to their speech. Speech and language therapists may have a virtual ally that is already in the patient’s home to support future therapy provision.

Background: Palliative care is identified internationally as a priority for efficacious dementia care. Research into "effective models" of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community. Methods: A scoping review was employed. The search strategy was devised to identify all peer-reviewed research papers relating to the above aim. This process was iterative, and the search strategy was refined as evidence emerged and was reviewed. All types of study designs and both quantitative and qualitative studies of non-pharmacological interventions were considered for inclusion. Results: The search identified 2,754 unique citations, of which 18 papers were deemed eligible for inclusion. Although a palliative care approach is recommended from early in the disease process, most evidence involves end-of-life care or advanced dementia and pertains to residential care. The majority of the research reviewed focused on the effects of advance care planning, and end-of-life care; specialist palliative care input, and/or generalist palliative care provided by dementia services to enable people to remain at home and to reduce costs of care. Community staff training in palliative care appeared to improve engagement with Specialist Palliative Care teams. Integration of dementia and palliative care services was found to improve care received for people with dementia and their carers. Conclusions: While the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia. This is imperative to enable people with dementia to inform their own care, to stay living at home for as long as possible, and, where appropriate, to die at home. [ABSTRACT FROM AUTHOR]

Dementia is causing global concern with its massive impacts on affected individuals, families, society, and national economies. As the disease progresses, patients' needs increase in number, depth, and breadth, covering physical, psychological, social, and spiritual domains. Care varies from place to place, from country to country and from east to west. To learn from some of these variations, we explored advanced dementia care in United Kingdom and Japan. Informed by an overview of literature on care of people with advanced dementia, we reflected on direct nonparticipant observations of care in urban areas of Northern Ireland and Japan. While we identified a common purpose to address the complex needs of people living with dementia, there were differences in the approach to care. Broadly, dementia care in United Kingdom tends toward person‐centered care with a strong interest in Advance Care Planning as part of a palliative care approach. In Japan, we found less evidence of early stage palliative care and more of family‐based decision making to inform care of older people. In both countries, dementia care varies regionally, being more available in some areas than others. International knowledge exchange and further comparative studies will help to improve care for people with advanced dementia, everywhere. [ABSTRACT FROM AUTHOR]

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Background: The goal of Palliative Day Services is to provide holistic care that contributes to the quality of life of people with life-threatening illness and their families. Quality indicators provide a means by which to describe, monitor and evaluate the quality of Palliative Day Services provision and act as a starting point for quality improvement. However, currently, there are no published quality indicators for Palliative Day Services. Aim: To develop and provide the first set of quality indicators that describe and evaluate the quality of Palliative Day Services. Design and setting: A modified Delphi technique was used to combine best available research evidence derived from a systematic scoping review with multidisciplinary expert appraisal of the appropriateness and feasibility of candidate indicators. The resulting indicators were compiled into 'toolkit' and tested in five UK Palliative Day Service settings. Results: A panel of experts independently reviewed evidence summaries for 182 candidate indicators and provided ratings on appropriateness, followed by a panel discussion and further independent ratings of appropriateness, feasibility and necessity. This exercise resulted in the identification of 30 indicators which were used in practice testing. The final indicator set comprised 7 structural indicators, 21 process indicators and 2 outcome indicators. Conclusion: The indicators fulfil a previously unmet need among Palliative Day Service providers by delivering an appropriate and feasible means to assess, review, and communicate the quality of care, and to identify areas for quality improvement. [ABSTRACT FROM AUTHOR]

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers. [ABSTRACT FROM AUTHOR]