Publications

INTRODUCTIONEarly-career researchers contribute significantly to dementia research and clinical practice. However, a growing group of early-career dementia researchers (ECDRs) lack appropriate support throughout their careers. Thus, we aim to (i) explore support needs, (ii) determine recommendations, and (iii) set the agenda for organizations to better support ECDRs.METHODSAn iterative, explanatory sequential mixed-methods design was applied. ...

Background: Advance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia.Aim: To gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop ...

BackgroundPeople with dementia and their family caregivers often encounter challenges in engaging in advance care planning (ACP), such as a lack of information and difficulties in engaging in ACP conversations. Using a user-centred design, we developed two interactive web-based tools as part of an ACP support website to stimulate ACP reflection and communication: (1) the 'Thinking Now About Later' tool, with open-ended questions about 'what ...

Objective: This study aimed to evaluate a theory-based website to support people with dementia and their families in the advance care planning (ACP) process. Methods: We conducted an eight-week evaluation study with a convergent parallel mixed-methods design involving people with mild to moderate dementia and their family caregivers who used the website at their convenience. Interviews were conducted at baseline and after 8 weeks to evaluate ...

Background: Wider social networks are increasingly recognized for supporting people with care needs. Health-promoting initiatives around the end of life aim to foster these social connections but currently provide little insight into how willing people are to help neighbours facing support needs. Objectives: This study describes how willing people are to help neighbours who need support practically or emotionally, whether there is a difference ...

Introduction: There is an increased number of web-based tools designed for people with dementia and their family caregivers and addressing communication and decision-making. The loss of cognitive functions associated with dementia can impact individuals ' experiences and use of web-based tools. There is a need for high quality and user-friendly web-based tools that support communication and decision-making for people with dementia and their ...

Introduction People with advanced cancer can experience a wide range of multidimensional symptoms or concerns, but little is known about when and how these fluctuate in daily life. Experience sampling methods (ESMs) involve repeated self-reports in people’s natural contexts aimed at uncovering everyday life experiences. ESM has limited recall bias and good ecological validity but might be burdensome to patients. This study aims to pretest and ...

Background Shelter-in-place orders during the COVID-19 pandemic created unmet health-related and access-related needs among older adults. We sought to understand the prevalence of these needs among community-dwelling older adults. Methods We performed a retrospective chart review of pandemic-related outreach calls to older adults between March and July 2020 at four urban, primary care clinics: a home-based practice, a safety net adult medicine ...