The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce.

Background: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these.

Intelligent digital tools for screening of brain connectivity and dementia risk estimation in people affected by mild cognitive impairment: the AI-Mind clinical study protocol.

More than 10 million Europeans show signs of mild cognitive impairment (MCI), a transitional stage between normal brain aging and dementia stage memory disorder. The path MCI takes can be divergent; while some maintain stability or even revert to cognitive norms, alarmingly, up to half of the cases progress to dementia within 5 years. Current diagnostic practice lacks the necessary screening tools to identify those at risk of progression.

Digital endpoints in clinical trials of Alzheimer's disease and other neurodegenerative diseases: challenges and opportunities.

Alzheimer's disease (AD) and other neurodegenerative diseases such as Parkinson's disease (PD) and Huntington's disease (HD) are associated with progressive cognitive, motor, affective and consequently functional decline considerably affecting Activities of Daily Living (ADL) and quality of life. Standard assessments, such as questionnaires and interviews, cognitive testing, and mobility assessments, lack sensitivity, especially in early stages of neurodegenerative diseases and in the disease progression, and have therefore a limited utility as outcome measurements in clinical trials. Major advances in the last decade in digital technologies have opened a window of opportunity to introduce digital endpoints into clinical trials that can reform the assessment and tracking of neurodegenerative symptoms.

Keeping track of and recognizing the value of Public Involvement work in dementia research.

The Public Involvement (PI) of people with dementia is slowly but progressively moving from a "nice to have" to a "must have" element of good-quality dementia research. Research funders and ethics committees increasingly ask for evidence of the planning of such involvement. The actual conduct and outcome of PI are, however, unfortunately typically under or inadequately reported.

Empowering interventions for people living with dementia: A European survey.

Aims: We aim to identify existing empowerment interventions for people living with dementia and to explore which used interventions and projects are considered empowering and why.

Design: This was an online survey.

Methods: We conducted an online survey between May 2018 and July 2018 amongst professionals interested in dementia care in Europe.

Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics.

Background: Patient engagement is becoming more customary in medicine development. However, embedding it in organizational decision-making remains challenging, partly due to lack of agreement on its value and the means to evaluate it. The objective of this project was to develop a monitoring and evaluation framework, with metrics, to demonstrate impact and enhance learning.

Understanding multi-stakeholder needs, preferences and expectations to define effective practices and processes of patient engagement in medicine development: A mixed-methods study.

Background: The holistic evolution of patient engagement in medicines development requires a more detailed understanding of the needs of all involved stakeholders, and one that better accounts for the specific needs of some potentially vulnerable patient populations and key stages in medicines development.

Objective: The purpose of this convergent mixed-methods study was to better understand the needs of different stakeholders concerning patient engagement at three key stages in medicines development: research priority setting, clinical trial design and early dialogues with Health Technology Assessment bodies and regulators.

Design: This study brought together findings from three sources: i) an online questionnaire, ii) face-to-face consultations with two potentially vulnerable patient populations, a workshop with Health Technology Assessment bodies, and iii) three-step modified Delphi methodology.

The language of behaviour changes in dementia: A mixed methods survey exploring the perspectives of people with dementia.

Aims: The aim of this study was to explore the opinions of people with dementia, about the language used to describe changes in behaviour associated with dementia.

Design: This study adopted a human rights approach in a mixed methods convergent parallel synthesis design.

Methods: Online and paper-based questionnaire data were collected between November 2019 and March 2020.

Selecting Remote Measurement Technologies to Optimize Assessment of Function in Early Alzheimer's Disease: A Case Study.

Despite the importance of function in early Alzheimer's disease (AD), current measures are outdated and insensitive. Moreover, COVID-19 has heighted the need for remote assessment in older people, who are at higher risk of being infection and are particularly advised to use social distancing measures, yet the importance of diagnosis and treatment of dementia remains unchanged. The emergence of remote measurement technologies (RMTs) allows for more precise and objective measures of function.

Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation.

Background: People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan-European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions.

Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement).

This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group 'Dementia Outcome Measures - Charting New Territory'.

A synthesis of the evidence on peer research with potentially vulnerable adults: how this relates to dementia.

Background: There is limited literature around peer research in dementia. This study aims to identify the benefits, the risks and the practical challenges and to develop a model of good practice in peer research with people with dementia.

Methods: We searched on PsycInfo, PubMed and Google Scholar for empirical investigations or discussion papers on peer research.

'I hate having nobody here. I'd like to know where they all are': Can qualitative research detect differences in quality of life among nursing home residents with different levels of cognitive impairment?

Objective: To ascertain if similarities or differences exist in perceptions of quality of life (QoL) amongst nursing home (NH) residents with different levels of cognitive impairment (CI).

Method: Face-to-face interviews using a simple 15-item semi-structured interview schedule with 61 older people with a CI (13 mild, 20 moderate and 28 severe) living in three Dublin area based NHs.

Results: Four key themes of QoL with accompanying sub-themes were identified: (1) social contact, (2) attachment, (3) pleasurable activities and (4) affect.