Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom: Results of an online survey.

Although literature on postdiagnostic support for people affected by young onset dementia acknowledges financial concerns, this topic has remained underresearched. The aim of this study was to explore the financial impact of a diagnosis of young onset dementia on individuals and families. An online survey, comprising binary yes/no, multiple-response and open-ended questions, was codesigned with people living with young onset dementia. The survey was promoted via networks and online platforms. Data were collected from August to October 2019. Survey respondents across the United Kingdom (n = 55) who had received a diagnosis of young onset dementia were aged between 45 and 64, were at different stages of dementia and had been diagnosed with thirteen different types of dementia. Of the 55 respondents, 71% (n = 39) had received assistance from family members when completing the survey. The main financial impact of a diagnosis of young onset dementia resulted from premature loss of income and reduced and often deferred pension entitlements. In some cases, care-costs became unaffordable. Lack of clarity of processes and procedures around needs assessments, carers' assessments and financial assessments by different organisations resulted in some families having to ask for legal advice and, in some cases, involved lengthy appeal processes. Future research needs to involve Adult Social Care and Third Sector organisations to help codesign and test financial management interventions to support people affected by this progressive health condition.

Speech and language therapy best practice for patients in prolonged disorders of consciousness: a modified Delphi study.

BACKGROUND: Research regarding speech and language therapy (SLT) for patients in prolonged disorders of consciousness (PDOC) is very limited. The Royal College of Physicians' (RCP) PDOC guideline provides recommendations regarding best practice, but does not give detail about many aspects of assessment and management. As a result, SLTs have little information regarding best practice for this complex patient group. AIMS: To ascertain the degree of consensus amongst expert SLTs regarding SLT best practice for patients in PDOC in order to inform the future development of SLT guidelines. METHODS & PROCEDURES: A two-round modified Delphi technique was used. Participants were recruited from major trauma centres and neurorehabilitation units in England and national SLT clinical excellence networks. To participate, SLTs had to be working on neurosciences, neurosurgery or neurorehabilitation wards that treat adult PDOC patients, or have ≥ 3 years' experience of working with PDOC. The Round 1 questionnaire was developed from the RCP's PDOC guideline and from existing research literature. It included ratings of statements regarding SLT best practice using Likert or temporal scales, with optional written justifications/comments and opportunities for participants to suggest additional statements. The percentage agreement amongst participants was calculated for each Round 1 statement. Written justifications for views were analysed using content analysis. The Round 2 questionnaire contained both quantitative and qualitative feedback from Round 1, allowing participants to reappraise their views. The final degree of consensus was then calculated after completion of both rounds. OUTCOMES & RESULTS: A total of 40 SLTs completed Round 1, with 36 completing Round 2 (90% response rate). Consensus was achieved for 87% (67/77) of statements regarding best practice on a variety of topics including communication, tracheostomy, dysphagia and oral hypersensitivity. The statements represented assessment, management and service delivery components of SLT practice. CONCLUSIONS & IMPLICATIONS: A total of 67 best practice statements were created. The statements provide a useful starting point for the creation of SLT guidelines to support best practice, and also have the potential to be used to advocate for the provision of SLT services for patients in PDOC. Future studies should focus on whether the expert opinion generated here can be borne out in experimental research.

General practitioners, primary care and support for carers in England: can training make a difference?

As a part of the national carers' strategy, the Department of Health commissioned six pilot workshops spread across England for General Practitioners (GPs) and other primary healthcare workers. The six workshops were held during September and October 2009, arranged by the Royal College of General Practitioners and planned in consultation with the Princess Royal Trust for Carers. The workshops were delivered by one of two GPs and by a carer. The Department of Health commissioned an evaluation of the workshop programme. This paper reports on the attitudes towards and knowledge of carers by GPs and other primary care workers, such as community matrons, practice nurses, healthcare assistants, practice managers and receptionists. It also tracks changes over time from the questionnaire responses pre- and post-workshop and 3 months later in the GPs' and other primary care workers' response to carers. Prior to the workshops, GPs and other primary care workers saw primary care as having a significant role in directly assisting carers, especially with emotional support and in signposting to other services. However, there was a lack of knowledge about issues facing carers, limited confidence in assisting carers and few services within the primary care teams directly focussed on carers. The workshops were regarded positively by those who attended, and the evaluation found that there was a positive impact with GPs and other primary care workers reporting specific actions they had taken post-workshop to assist carers, greater confidence and awareness in working with carers, and increased knowledge about carers. The paper concludes by recommending how the pilot programme might be rolled out more widely.