New strategies are needed to help people cope with the repercussions of neurodegenerative disorders such as Alzheimer's disease. Patients and caregivers face different challenges, but here we investigated an intervention tailored for this combined population. The program focused on training skills such as attending to the present moment nonjudgmentally, which may help reduce maladaptive emotional responses. Patients participated together with caregivers in weekly group sessions over 8 weeks. An assessment battery was individually administered before and after the program. Pre-post analyses revealed several benefits, including increased quality-of-life ratings, fewer depressive symptoms, and better subjective sleep quality. In addition, participants indicated that they were grateful for the opportunity to learn to apply mindfulness skills and that they would recommend the program to others. In conclusion, mindfulness training can be beneficial for patients and their caregivers, it can be delivered at low-cost to combined groups, and it is worthy of further investigation.

BackgroundMany young adults with Type 1 diabetes experience poor outcomes. The aim of this systematic review was to synthesize the evidence regarding the effectiveness of interventions aimed at improving clinical, behavioural or psychosocial outcomes for young adults with Type 1 diabetes.MethodsElectronic databases were searched. Any intervention studies related to education, support, behaviour change or health service organizational change for young adults aged between 15‐30 years with Type 1 diabetes were included. A narrative synthesis of all studies was undertaken due to the large degree of heterogeneity between studies.ResultsEighteen studies (of a possible 1700) were selected and categorized: Health Services Delivery (n = 4), Group Education and Peer Support (n = 6), Digital Platforms (n = 4) and Diabetes Devices (n = 4). Study designs included one randomized controlled trial, three retrospective studies, seven feasibility/acceptability studies and eight studies with a pre/post design. Continuity, support, education and tailoring of interventions to young adults were the most common themes across studies. HbA1c was the most frequently measured outcome, but only 5 of 12 studies that measured it showed a significant improvement.ConclusionBased on the heterogeneity among the studies, the effectiveness of interventions on clinical, behavioural and psychosocial outcomes among young adults is inconclusive. This review has highlighted a lack of high‐quality, well‐designed interventions, aimed at improving health outcomes for young adults with Type 1 diabetes.

Primary progressive aphasia is a language-based dementia that initially spares other cognitive domains; however, aphasia interferes with many life roles such as work and interpersonal relationships. Psycho-educational programs, such as support groups have been shown to be effective for persons with Alzheimer’s dementia; however, little is known regarding their effectiveness for persons with primary progressive aphasia. This paper describes the development of a program that offers support, education and activities for persons with primary progressive aphasia and their care-partners and its feasibility. Development and structure of pilot and formal intervention groups are described. Thematic analysis of both groups included the following themes: (1) coping with limitations and language decline; (2) dealing with increased dependency; (3) expressing resilience and making adaptations; (4) experiencing stigma (pilot group) and confronting stigma (intervention group); (5) experiencing self-confidence; and (6) feeling a sense of belonging. The knowledge gained from this process may be useful in designing programs for individuals with aphasic dementia and preserved insight. Evidence-based data from supportive interventions for persons with primary progressive aphasia and their care-partners are needed.

BackgroundAchieving consensus from a range of relevant stakeholders about an agreed set of core outcomes to be measured and reported as a minimum in clinical trials has the potential to enhance evidence synthesis and make findings more relevant and applicable. Intervention research to improve outcomes for young adults with type 1 diabetes (T1DM) is hampered by inconsistent use of outcome measures. This population frequently struggles to manage their condition and reports suboptimal clinical outcomes. Our aim was to conduct an international, e-Delphi consensus study to identify a core outcome set (COS) that key stakeholders (young adults with T1DM, diabetes health professionals, diabetes researchers and diabetes policy makers) consider as essential outcomes for future intervention research.MethodsUsing a list of 87 outcomes generated from a published systematic review, we administered two online surveys to a sample of international key stakeholders. Participants in the first survey (survey 1; n = 132) and the second survey (survey 2; n = 81) rated the importance of the outcomes. Survey 2 participants received information on total mean rating for each outcome and a reminder of their personal outcome ratings from Survey 1. Survey 2 results were discussed at a consensus meeting and participants (n = 12: three young adults with T1DM, four diabetes health professionals, four diabetes researchers and one diabetes policy maker) voted on outcomes. Final core outcomes were included provided that 70% of consensus group participants voted for their inclusion.ResultsEight core outcomes were agreed for inclusion in the final COS: measures of diabetes-related stress; diabetes-related quality of life; number of severe hypoglycaemic events; self-management behaviour; number of instances of diabetic ketoacidosis (DKA); objectively measured glycated haemoglobin (HbA1C); level of clinic engagement; and perceived level of control over diabetes.ConclusionsThis study is the first to identify a COS for inclusion in future intervention trials to improve outcomes for young adults with T1DM. Use of this COS will improve the quality of future research and increase opportunities for evidence synthesis. Future research is necessary to identify the most robust outcome measure instruments.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-017-2364-y) contains supplementary material, which is available to authorized users.

Plain English summaryMany young adults with type 1 diabetes (T1D) find it hard to control their blood glucose levels. With lots of things going on in their lives, their diabetes is often not the most important thing to them. That means they do not always take care of their T1D, for example by going to clinic appointments. Young adults with T1D do not usually get the chance to make suggestions on how to improve diabetes services. Being involved could help young adults to shape the diabetes care services that support them. Since 2014 a diabetes research team based in Galway has been looking at ways to improve how diabetes services are delivered to young adults. Eight young adults (aged 18-25 years) with T1D called the Young Adult Panel (YAP) are members of this team and have helped design the "D1 Now" intervention which aims to improve diabetes services. The YAP came up with questions to ask other young adults with T1D, their families and friends and healthcare providers about their experiences of healthcare services and how these could be improved. The YAP also shared messages from the research at national conferences and on local radio. They helped with writing sections of a grant application to take this research work forward. Our experience has shown the importance of involving young adults with T1D in helping to design research focusing on ways to improve their diabetes service that will help them and other young adults to live with diabetes in the future. O'Hara et al. Research Involvement and Engagement (2017) 3:21 DOI 10.1186/s40900-017-0068-9(Continued from previous page) Abstract Background Research indicates that young adults (18-25 year olds) with type 1 diabetes (T1D) often disengage from health services and their general diabetes management. Involving young adults with T1D in co-designing research to develop a behaviour change intervention to improve engagement with health services could potentially improve overall self management and health. A local youth mental health organisation called Jigsaw, Galway developed a very successful model for involving users in service design and development. Based on this model, the aim was to form a Young Adult Panel (YAP) of 18-25 year olds with T1D and involve them in all aspects of a study to develop an intervention to improve health and wellbeing for young adults with T1D called D1 Now.Methods Recruitment of young adults was achieved through a multimedia campaign. A consultation event was organised, followed by interviews with interested young adults. A panel of 8 members was selected. Following initial training for YAP members in committee skills and an introduction to different research methods and terms, YAP members participated in different stages of the research process. They were represented on the research study steering group and attended research meetings. They developed research materials, reviewed and interpreted research findings and helped develop the online platform to enhance engagement between young adults and their diabetes healthcare providers....

Our data suggest that group follow-up as the sole means of follow-up after structured education for individuals with type 1 diabetes is as effective as a return to one-to-one clinic visits.

The diabetes clinic was described as an important and valued resource by young adults and service providers. Collaborative relationships between young adults and service providers enhanced service provision in this study. According to the results of this study, clinic attendance may be improved by increasing opportunities for relationship development between service providers and young adults. Statement of contribution What is already known on this subject? Attendance by young adults at hospital-based diabetes clinics is important to support self-management. Young adults with type 1 diabetes are at risk of clinic non-attendance. What does this study add? This study presents an explanatory theory of clinic attendance among young adults with type 1 diabetes. According to this theory: Barriers within existing models of service delivery prevent collaboration and may contribute to non-attendance. Relationships between service users and providers can establish or maintain regular clinic attendance by fostering the engagement of young adults with diabetes clinics.

OBJECTIVETo develop a linguistically and psychometrically validated U.K. English (U.K./Ireland) version of the Diabetes-Specific Quality-of-Life Scale (DSQOLS) for adults with type 1 diabetes.RESEARCH DESIGN AND METHODSWe conducted independent forward and backward translation of the validated German DSQOLS. An iterative interview study with health professionals (n = 3) and adults with type 1 diabetes (n = 8) established linguistic validity. The DSQOLS was included in three Dose Adjustment for Normal Eating (DAFNE) studies (total N = 1,071). Exploratory factor analysis (EFA) was undertaken to examine questionnaire structure. Concurrent and discriminant validity, internal consistency, and reliability were assessed.RESULTSEFA indicated a six-factor structure for the DSQOLS (social aspects, fear of hypoglycemia, dietary restrictions, physical complaints, anxiety about the future, and daily hassles). High internal consistency reliability was found for these factors and the weighted treatment satisfaction scale (α = 0.85–0.94). All subscales were moderately, positively correlated with the Audit of Diabetes-Dependent Quality-of-Life (ADDQoL) measure, demonstrating evidence of concurrent validity. Lower DSQOLS subscale scores [indicating impaired quality of life (QoL)] were associated with the presence of diabetes-related complications.CONCLUSIONSThe DSQOLS captures the impact of detailed aspects of modern type 1 diabetes management (e.g., carbohydrate counting and flexible insulin dose adjustment) that are now routine in many parts of the U.K. and Ireland. The U.K. English version of the DSQOLS offers a valuable tool for assessing the impact of treatment approaches on QoL in adults with type 1 diabetes.