Datasheet1_The memory clinic and psychosocial intervention: Translating past promise into current practices.doc

Disproportionate negative effects since the pandemic have amplified the already limited post-diagnostic support for older people with dementia. This paper summarizes an exploratory randomized controlled study of a proactive family-based intervention compared with “usual” post-diagnostic dementia care. Memory clinic practitioners collaborated with the family doctor (GP) to coordinate this. At 12-month follow-up, positive effects on mood, behavior, carer coping and maintenance of care at home were found. Current approaches to deliver post-diagnostic support in primary care may require rethinking since (i) GP workloads have increased with low numbers of GPs per head of population in parts of England; and (ii) unlike many other long-term conditions, ongoing stigma, fear and uncertainty associated with dementia adds to the huge complexity of timely care provision. There is a case for return to a “one-stop facility”, with a single pathway of continuing multidisciplinary coordinated care for older people with dementia and families. Future longitudinal research could compare structured post-diagnostic psychosocial intervention coordinated by skilled practitioners in a single locality memory service “hub”, against other approaches such support organized mostly within primary care. Dementia-specific instruments for outcome measurement are available for use in routine practice, and should be included in such comparative studies.</p

Additional file 1: of Comparison of patient perceptions of Telehealth-supported and specialist nursing interventions for early stage COPD: a qualitative study

Patient interview topic guide. (PDF 135 kb

Additional file 1: of Comparison of patient perceptions of Telehealth-supported and specialist nursing interventions for early stage COPD: a qualitative study

Patient interview topic guide. (PDF 135 kb

Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations

Background: There are no disease-modifying treatments for dementia. There is also no consensus on disease modifying outcomes. We aimed to produce the first evidence-based consensus on core outcome measures for trials of disease modification in mild-to-moderate dementia. Methods and findings: We defined disease-modification interventions as those aiming to change the underlying pathology. We systematically searched electronic databases and previous systematic reviews for published and ongoing trials of disease-modifying treatments in mild-to-moderate dementia. We included 149/22,918 of the references found; with 81 outcome measures from 125 trials. Trials involved participants with Alzheimer’s disease (AD) alone (n = 111), or AD and mild cognitive impairment (n = 8) and three vascular dementia. We divided outcomes by the domain measured (cognition, activities of daily living, biological markers, neuropsychiatric symptoms, quality of life, global). We calculated the number of trials and of participants using each outcome. We detailed psychometric properties of each outcome. We sought the views of people living with dementia and family carers in three cities through Alzheimer’s society focus groups. Attendees at a consensus conference (experts in dementia research, disease-modification and harmonisation measures) decided on the core set of outcomes using these results. Recommended core outcomes were cognition as the fundamental deficit in dementia and to indicate disease modification, serial structural MRIs. Cognition should be measured by Mini Mental State Examination or Alzheimer's Disease Assessment Scale-Cognitive Subscale. MRIs would be optional for patients. We also made recommendations for measuring important, but non-core domains which may not change despite disease modification. Limitations: Most trials were about AD. Specific instruments may be superseded. We searched one database for psychometric properties. Interpretation: This is the first review to identify the 81 outcome measures the research community uses for disease-modifying trials in mild-to-moderate dementia. Our recommendations will facilitate designing, comparing and meta-analysing disease modification trials in mild-to-moderate dementia, increasing their value. Trial registration: PROSPERO no. CRD42015027346

MOESM4 of Measuring fidelity of delivery of the Community Occupational Therapy in Dementia-UK intervention

Additional file 4. Percentage of transcripts in which individual components were delivered fully, to some extent, or not at all per COTiD-UK session

MOESM3 of Measuring fidelity of delivery of the Community Occupational Therapy in Dementia-UK intervention

Additional file 3. COTiD-UK checklist

MOESM2 of Measuring fidelity of delivery of the Community Occupational Therapy in Dementia-UK intervention

Additional file 2. Final coding guideline

MOESM1 of Measuring fidelity of delivery of the Community Occupational Therapy in Dementia-UK intervention

Additional file 1. COTiD-UK framewor

MOESM1 of Promoting Independence in Dementia (PRIDE): protocol for a feasibility randomised controlled trial

Additional file 1. VITA SPIRIT 2013 Checklist: recommended items to address in a clinical trial protocol and related documents