Insights and recommendations for working collaboratively and improving care in Alzheimer's disease: Learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council.

Background: Collaborations between patient organisations (POs) and the pharmaceutical industry can help identify and address the unmet needs of people living with a disease. In Alzheimer's disease (AD), the scale and complexity of the current unmet needs call for a broad and cross-sectoral collaboration, including people living with Alzheimer's (PLWA), their care partners and the wider research community.

Objective: This study aimed to describe learnings from the Finding Alzheimer's Solutions Together (F.

Rationale and design of the ABOARD project (A Personalized Medicine Approach for Alzheimer's Disease).

Unlabelled: The key to stopping Alzheimer's disease (AD) lies in the pre-dementia stages, with the goal to stop AD before dementia has started. We present the rationale and design of the ABOARD (A Personalized Medicine Approach for Alzheimer's Disease) project, which aims to invest in personalized medicine for AD. ABOARD is a Dutch public-private partnership of 32 partners, connecting stakeholders from a scientific, clinical, and societal perspective.

Towards a future where Alzheimer's disease pathology is stopped before the onset of dementia.

Alzheimer's disease (AD) is a major healthcare challenge with no curative treatment at present. To address this challenge, we need a paradigm shift, where we focus on pre-dementia stages of AD. In this Perspective, we outline a strategy to move towards a future with personalized medicine for AD by preparing for and investing in effective and patient-orchestrated diagnosis, prediction and prevention of the dementia stage.

Knowledge About Dementia Among Family Caregivers With a Turkish or Moroccan Immigrant Background: Development and Validation of a Dementia Knowledge Scale.

Objective: To describe the development and validation of the Dementia Knowledge Scale (DKS) among family caregivers with a Turkish or Moroccan immigrant background.

Methods: The 11 items of the DKS, selected by professionals and people with a Turkish or Moroccan background, were translated and adapted in Turkish and Dutch. The feasibility, comprehensibility and appropriateness of the 2 language versions were examined.

The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background.

Background: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch.

Methods: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach's alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA).

Effects of an educational peer-group intervention on knowledge about dementia among family caregivers with a Turkish or Moroccan immigrant background: A cluster randomised controlled trial.

Objective: The aim of this paper is to examine the effects of an educational peer-group intervention on knowledge about dementia, perceived ability to talk about it, received support and self-perceived pressure from informal care among family caregivers with a Turkish or Moroccan immigrant background who cared for a person with dementia.

Methods: This paper is based on a cluster randomised controlled trial with three measures, including participants who knew or cared for a person with dementia. For the purpose of this study, a selection was made of participants who cared for a person with dementia.

Effects of an educational intervention on health-related quality of life among family caregivers of people with dementia with a Turkish or Moroccan immigrant background: Insights from a cluster randomised controlled trial.

Objective: Gaining understanding of the health-related quality of life (HRQL) of family caregivers of people with dementia with Turkish or Moroccan immigrant backgrounds and to examine whether an educational peer group intervention can improve HRQL.

Methods: Understanding of HRQL and associated variables was obtained by multiple linear regression analyses. The effects of the intervention on HRQL were assessed in multilevel analyses using data collected before the start (baseline), directly after the intervention (one to two weeks after baseline) and three months after the start of the intervention.

Online Self-Management Support for Family Caregivers Dealing With Behavior Changes in Relatives With Dementia (Part 2): Randomized Controlled Trial.

Background: Online contacts with a health professional have the potential to support family caregivers of people with dementia.

Objective: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention-involving among others personal email contacts with a dementia nurse-was compared with online interventions without these email contacts.

Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1): Mixed Methods Study.

Background: Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia, and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them.

Objective: The aim of this study was to understand (1) family caregivers' actual use of various elements of the online self-management support, (2) family caregivers' evaluation and satisfaction with the various elements, and (3) nurses' usage and evaluations of the online support through the tailored email contacts.

Development of memory clinics in the Netherlands over the last 20 years.

Objectives: Memory clinics (MCs) have been established to improve diagnosis and treatment of cognitive disorders, including dementia. The aim of this study was to determine the characteristics and working methods of MCs in the Netherlands in 2016. More insight into different working methods can be used to improve the quality of care in Dutch MCs.

Online Self-Management Support for Family Caregivers to Help Them Manage Behavior Changes in Their Relative With Dementia: Study Protocol for a Randomized Controlled Trial and a Process Evaluation.

Background: Online interventions are potentially effective ways to support family caregivers in the management of behavior changes in their relative with dementia.

Objective: The objective of this paper is to present the design of a study evaluating and comparing 3 intervention arms for online self-management support.

Methods: A randomized controlled trial (RCT) will be conducted with a total of 81 family caregivers of community-dwelling people with dementia in the Netherlands.

Explanatory models and openness about dementia in migrant communities: A qualitative study among female family carers.

Background The prevalence of dementia is increasing among people with a Turkish, Moroccan and Surinamese-Creole background. Because informal care is very important in these communities, it is pertinent to see what explanations female family carers have for dementia and whether they can discuss dementia openly within the community and the family. Method Forty-one individual interviews and six focus group interviews ( n = 28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia, and who live in The Netherlands.

Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial.

Background: The World Health Organization stresses the importance of accessible and (cost)effective caregiver support, given the expected increase in the number of people with dementia and the detrimental impact on the mental health of family caregivers.

Methods: This study assessed the effectiveness of the Internet intervention 'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at baseline, were randomly assigned to two groups.

Acceptability of a guided self-help Internet intervention for family caregivers: mastery over dementia.

Background: The number of people with dementia is increasing rapidly. Providing care to a relative or friend with dementia may lead to serious mental health problems. Internet interventions may offer opportunities to improve the availability and accessibility of (cost)effective interventions to reduce family caregivers' psychological distress.

Family care for immigrants with dementia: The perspectives of female family carers living in The Netherlands.

Background: The prevalence of dementia is increasing among non-western immigrants. It is known that family care is provided relatively often among immigrant groups. Until now, however, relatively little was known about how relatives of people with dementia in the immigrant communities perceive family care.

Executive functions of sedentary elderly may benefit from walking: a systematic review and meta-analysis.

Objective: The goal of the present meta-analysis was to address studies that examined the relationship between walking as one of the most prevalent types of leisure-time activity and executive function being a higher-order cognitive function essential for independent functioning.

Methods: The following data sources were used: English-language publications in PubMed, EMBASE, PsycINFO, Cinahl, and Cochrane; the last search took place in January 2012. From these data sources, only randomized controlled trials including older people with (N = 3) and without (N = 5) cognitive impairment were selected.

Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: design of a randomized controlled trial.

Background: The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers.