Use and uptake of technology by people with dementia and their supporters during the COVID-19 pandemic.

OBJECTIVE: This rapid review aims to identify the types of technologies used by people with dementia and their supporters during the COVID-19 pandemic, and the issues which influenced technology adoption within their usual care routines. METHODS: PubMed, PsychInfo, Scopus, and Cochrane COVID reviews were searched to identify peer-review studies published since 2020. A total of 18 studies were included and synthesised thematically. RESULTS: Of these, most were conducted in the community (n = 15) with people with dementia only (n = 11) and involved qualitative methods (n = 11). The majority (n = 12) focused on digital off-the-shelf and low-cost solutions, such as free video conferencing platforms, to access care, socialise or take part in interventions. Whilst often well-accepted and associated with positive outcomes (such as improved social connectedness), lack of digital literacy or support to use technologies, limited access to appropriate technology, individuals' physical, cognitive, or sensory difficulties, were highlighted and likely to threaten the adoption of these solutions. The quality of the evidence was mixed, neither very robust nor easily generalisable which may be attributed to the challenges of conducting research during the pandemic or the need to rapidly adapt to a new reality. CONCLUSION: While COVID-19 has fast-tracked the adoption of technology, its use is likely to continue beyond the pandemic. We need to ensure this technology can leverage dementia support and care and that people with dementia are enabled and empowered to use it.

Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment.

INTRODUCTION: Ageing in place (AIP) for persons with dementia is encouraged by European governments and societies. Healthcare packages may need reassessment to account for the preferences of care funders, patients and informal caregivers. By providing insight into people's preferences, discrete choice experiments (DCEs) can help develop consensus between stakeholders. This protocol paper outlines the development of a Dutch national study to cocreate a healthcare package design methodology built on DCEs that is person-centred and helps support informal caregivers and persons with dementia to AIP. A subpopulation analysis of persons with dementia with a migration background is planned due to their high risk for dementia and under-representation in research and care. METHODS AND ANALYSIS: The DCE is designed to understand how persons with dementia and informal caregivers choose between different healthcare packages. Qualitative methods are used to identify and prioritise important care components for persons with dementia to AIP. This will provide a list of care components that will be included in the DCE, to quantify the care needs and preferences of persons with dementia and informal caregivers. The DCE will identify individual and joint preferences to AIP. The relative importance of each attribute will be calculated. The DCE data will be analysed with the use of a random parameters logit model. ETHICS AND DISSEMINATION: Ethics approval was waived by the Amsterdam University Medical Center (W23_112 #23.137). A study summary will be available on the websites of Alzheimer Nederland, Pharos and Amsterdam Public Health institute. Results are expected to be presented at (inter)national conferences, peer-reviewed papers will be submitted, and a dissemination meeting will be held to bring stakeholders together. The study results will help improve healthcare package design for all stakeholders.

Supporting Resilience of Older Adults with Cognitive Decline Requires a Multi-Level System Approach.

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.

Patient coaching: What do patients want? A mixed methods study in waiting rooms of outpatient clinics.

INTRODUCTION: Effective communication in specialist consultations is difficult for some patients. These patients could benefit from support from a coach who accompanies them to and during medical specialist consultations to improve communication in the consultation room. This study aims to investigate patients' perspective on interest in support from a patient coach, what kind of support they would like to receive and what characterizes an ideal patient coach. METHODS: We applied a mixed method design to obtain a realistic understanding of patients' perspectives on a patient coach. Patients in the waiting rooms of outpatient clinics were asked to fill out a short questionnaire which included questions about demographic characteristics, perceived efficacy in patient-provider interaction and patients' interest in support from a patient coach. Subsequently, patients interested in a patient coach were asked to participate in a semi-structured interview. The quantitative data were examined using univariate analysis and the qualitative interview data were analysed using content analysis. RESULTS: The survey was completed by 154 patients and eight of them were interviewed. Perceived efficacy in patient-physician interactions was the only variable that showed a significant difference between patients with and without an interest in support from a patient coach. The interviews revealed that a bad communication experience was the main reason for having an interest in support from a patient coach. Before the consultation, a patient coach should take the time to get to know the patient, build trust, and help the patient create an agenda, so take the patient seriously and recognize the patient as a whole person. During the consultation, a patient coach should support the patient by intervening and mediating when necessary to elicit the patient's agenda. After the consultation, a patient coach should be able to explain and discuss medical information and treatment consequences. An ideal patient coach should have medical knowledge, a strong personality and good communication skills. CONCLUSION: Especially patients who had a bad communication experience in a specialist consultation would like support from a patient coach. The kind of support they valued most was intervening and mediating during the consultation. To build the necessary trust, patient coaches should take time to get to know the patient and take the patient seriously. Medical knowledge, good communication skills and a strong personality were considered prerequisites for patient coaches to be capable to intervene in specialist consultations.

Behavioral changes in migrants with dementia : Experiences of professional caregivers.

BACKGROUND: Professional caregivers take care of an increasing number of migrants with dementia who may show behavioral changes. OBJECTIVE: Insight into the experiences of professional caregivers concerning the care for people with a migration background who suffer from dementia and behavioral changes. MATERIAL AND METHODS: Semi-structured interviews with 20 professional caregivers providing community and residential care. RESULTS: The caregivers' experiences focus on behavioral changes itself and on their efforts to offer person-centered care. Caregivers are aware of the mismatch between the cultural background of the client and their relatives and the professional care context. The different care perspectives of relatives and professionals sometimes result in conflict and poor collaboration. Over time, the reflections on experiences result in an awareness that more expertise and support is needed. CONCLUSION: Professional caregivers deserve support in their aim to provide high quality care for migrants with dementia and behavioral changes.

Intersectionality and its relevance for research in dementia care of people with a migration background.

BACKGROUND: Despite the care and support needs of migrants affected by dementia differing from the population of the country where they live now, most European countries do not provide specific strategies to address migration in their national dementia plans. The concept of intersectionality provides an innovative approach to dementia care perspectives and methodologies. OBJECTIVE: The aim is to define intersectionality and to provide examples of applying the concept to dementia care research, focusing on people with a migration background. METHODS: This article was conceptualized and discussed during virtual INTERDEM taskforce meetings in 2020/2021, while discussing identified literature on intersectionality, migration, and dementia care research. RESULTS: Using an intersectionality framework allows understanding of a person's lived experience by considering the dimensionality, co-occurrence and interlocking of factors (e.g., sex/gender, socioeconomic status, ethnicity, migration status, geographic location/place). CONCLUSION: Intersectionality can be applied as a conceptual and methodological approach to identify and address gaps in perspectives and in (dementia care) research to overcome the threat of ignorance, exclusion and discrimination.

[Vaccination willingness and educational level]. / Vaccinatiebereidheid en opleidingsniveau.

Vaccination is an important part of the fight against COVID-19 virus. A predictor of the proportion of people who will actually take a vaccination is the willingness to vaccinate among the population. Literature shows that vaccination willingness among people with lower socioeconomic status is lower than among other groups. In this contribution we describe to what extent this is also the case in the Netherlands and show how risk perception, trust in the effects and safety of the vaccine, and health literacy may be related to this. Finally, we highlight a number of intervention strategies that can make a positive contribution to vaccination willingness among lower educated groups.

The challenges of achieving timely diagnosis and culturally appropriate care of people with dementia from minority ethnic groups in Europe.

In a just society, everyone should have equal access to healthcare in terms of prevention, assessment, diagnosis, treatment and care. Europe is a multicultural society made up of people who identify with a wide range of ethnic groups. Many older people from minority ethnic groups also have a direct migration background. Several studies have shown that there is a lack of equity in relation to dementia diagnoses and care because equal opportunities do not necessarily translate into equal outcomes. An expert ethics working group led by Alzheimer Europe has produced an extensive report on this issue, a policy brief and a guide for health and social care workers. In this brief summary, the authors/members of the expert working group present some of the key challenges and recommendations for healthcare clinicians striving to provide timely diagnosis and good quality care and treatment to people with dementia from all ethnic groups.

Patient coaching in secondary care: healthcare professionals' views on target group, intervention and coach profile.

BACKGROUND: Not all patients are able to communicate effectively during consultations with medical specialists. Patient coaching has shown to be effective for enhancing communication. OBJECTIVE: We aimed to get healthcare professionals' views on target groups for patient coaching, on supportive elements in patient coaching and on the necessary qualifications and profile of a patient coach, to further our knowledge on the concept of patient coaching as supportive intervention for patients in consultations with medical specialists. METHODS: We chose a qualitative research design and interviewed 18 healthcare professionals (six medical specialists, four family physicians, four community nurses and four nurse specialists/physician assistants) and analysed the verbatim transcripts using Qualitative Analysis Guide of Leuven. After a short introduction of the global concept of patient coaching and presentation of patients' perceived barriers, two interviewers structured the interview around three research questions: which patients could benefit from a patient coach, what should such a coach do and who could act like such a coach? RESULTS: Participants describe patients who could benefit from patient coaching as generally vulnerable (e.g. older age, insufficiently accompanied, lower socioeconomic status, co-morbidity and cognitive problems) but also patients who are situationally vulnerable (e.g. elicited by bad news). Patient coaching should comprise emotional and instrumental support, aiming at reducing stress and improving the processing of medical information. Patient coaching should start from the patient's home and include preparing questions, navigating to and in the hospital, recording information during the consultation, checking understanding and recalling information. Patient coaches should have at least basic medical knowledge and a higher education. CONCLUSION: Healthcare professionals believe that patient coaching by a trained professional with medical knowledge could be beneficial to patients who are stressed when visiting a medical specialist. Future research should involve the views of patients on patient coaching, focus on investigating to what extent patient coaching is able to reduce stress and support a patient in processing medical information and the preferred patient coach's profile.

Older adults' active involvement in an undergraduate program in gerontology: Motives and meaning.

Two Dutch undergraduate programs in applied gerontology have teamed up with older volunteers to educate students in collaborating with older adults in the field of age-friendly service development. The research question of this study was: What are the motives and meanings of the older volunteers concerning their participation in an undergraduate program?An explorative descriptive qualitative design was used to study the motives and meanings of the older volunteers through semi-structured interviews (n = 11) and a focus group interview (n = 4). Two themes and nine categories emerged: (1) Personal norms and values (categories: responsible life attitude, contribution, self-determination), (2) Personal gain (categories: intergenerational education, personal development, staying healthy, pleasure, feeling appreciated, feeling connected). Personal norms and values and personal gains are meaningful to older volunteers in applied gerontology education. Universities should respect these when designing measures for improving participation methods.

Putting primary prevention of dementia on everybody's agenda.

Many publications on dementia start by outlining the current estimated number of people with dementia and how that figure is going to double (in Western societies) or even quadruple (in developing countries) in the coming decades as a result of increasing life expectancy (in itself a good development). Dementia is therefore a huge challenge to society, both in terms of providing good care for persons living with dementia and their family caregivers, as well as in searching for curative solutions. Both these challenges are complex. Fortunately, recent research indicates primary prevention to be a promising additional strategy in the dementia quest. Now that epidemiological research robustly shows the link between lifestyle and risk of dementia, new challenges emerge, such as how to increase public awareness about brain health, how to develop and implement strategies to promote brain healthy lifestyles and how to avoid increasing health inequalities. Interdem, the pan-European network of researchers on Psychosocial Interventions in Dementia, strongly welcomes this new strategy and consequently established a taskforce on primary prevention. In this position paper, we outline what we see as main building blocks of primary prevention of dementia.

Advance care planning with people with dementia: a process evaluation of an educational intervention for general practitioners.

BACKGROUND: General practitioners (GPs) are advised to offer advance care planning (ACP) to people with dementia (PWD). In a randomized controlled trial, an educational intervention for GPs aimed at initiating and optimizing ACP proved to be effective. During the intervention most GPs were accompanied by their practice nurse (PN). To provide insights into the intervention's successful components and what could be improved, we conducted a process evaluation and explored implementation, mechanisms of impact and contextual factors. METHODS: We used the Medical Research Council guidance for process evaluations. Implementation was explored identifying reach and acceptability. We performed descriptive analyses of participants' characteristics; selection, inclusion and intervention attendance; a GP post-intervention survey on initiating ACP; a post intervention focus group with trainers of the intervention. Mechanisms of impact were explored identifying adoption and appropriateness. We used: participants' intervention ratings; a GP post-intervention survey on conducting ACP; ACP documentation in PWD's medical files; post-intervention interviews with PWD/FC dyads. All data was used to identify contextual factors. RESULTS: The intervention was implemented by a small percentage of the total Dutch GP population invited, who mostly included motivated PWD/FC dyads with relatively little burden, and PWD with limited cognitive decline. The mechanisms of impact for GPs were: interactively learning to initiate ACP with training actors with a heterogeneous group of GPs and PNs. For PWD/FCs dyads, discussing non-medical preferences was most essential regarding their SDM experience and QoL. Some dyads however found ACP stressful and not feasible. Younger female GPs more often initiated ACP. Male PWD and those with mild dementia more often had had ACP. These characteristics and the safe and intimate training setting, were important contextual facilitators. CONCLUSION: We recommend Interventions aimed at improving ACP initiation with PWD by GPs to include interactive components and discussion of non-medical preferences. A safe environment and a heterogeneous group of participants facilitates such interventions. However, in practice not all FC/PWD dyads will be ready to start. Therefore, it is necessary to check their willingness when ACP is offered.

Impact of a Nurse-Led Health Promotion Intervention in an Aging Population: Results From a Quasi-Experimental Study on the "Community Health Consultation Offices for Seniors".

Objective: The study evaluated the nurse-led intervention "Community Health Consultation Offices for Seniors (CHCO)" on health-related and care needs-related outcomes in community-dwelling older people (⩾60 years). Method: With a quasi-experimental design, the CHCO intervention was evaluated on health-related and care needs-related outcomes after 1-year follow-up. Older people who received the intervention were frail, overweight, or were smoking. The comparison group received care as usual. In both groups, similar data were collected on health status, falls and fractures, and care needs. In the intervention group, additional data were collected on biometric measures and health-related behavior. Results: The intervention group and the care-as-usual group included 403 seniors and 984 seniors, respectively. Health-related outcomes, behaviors, and biometric measures, remained stable. After 1 year, care needs increased for both groups, but at a lower rate for the care-as-usual group. Discussion: The CHCO intervention showed no significant improvement on health-related outcomes or stability in care needs-related outcomes.

Educating Dutch General Practitioners in Dementia Advance Care Planning: A Cluster Randomized Controlled Trial.

OBJECTIVES: Advance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care. DESIGN: A single-blinded cluster randomized controlled trial. SETTING AND PARTICIPANTS: In 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice. METHODS: Intervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering. RESULTS: 38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P = .002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P = .003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P < .001) preferences per person with dementia than control group GPs. CONCLUSIONS AND IMPLICATIONS: Our educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown.

Experiences and views of older people on their participation in a nurse-led health promotion intervention: "Community Health Consultation Offices for Seniors".

BACKGROUND: The growing number of community-dwelling older adults and the increased risks of adverse health events that accompany ageing, call for health promotion interventions. Nurses often lead these interventions. The views and experiences of older adults participating in these interventions have rarely been studied. To understand the views of targeted older adults, qualitative studies are essential. The aim of this study was to investigate the views and experiences of older adults on their participation in a nurse-led intervention, taking into account their views on healthy aging. METHODS: In a qualitative study, nineteen Dutch older adults aged 62 to 92 years participated in semi-structured interviews. These were transcribed verbatim and coded with the Qualitative Data Analysis Miner software program. The Qualitative Analysis Guide of Leuven was used for data analysis. RESULTS: Based on the analysis of the interviews, the following main themes emerged from the data reflecting the experiences of the participants: 1) awareness of aging, 2) experienced interaction with the nurse, and 3) perception of the consultations as a check-up and/or personal support. CONCLUSIONS: This study underscores the importance of nurse-led interventions that match older adults' personal views concerning healthy living, and their views and experiences concerning these interventions. Older adults' holistic views of healthy living were not always assessed and valued by the nurses. Also, our study shows a wide variety of expectations, views and experiences among the participating older adults. This implies that health professionals should adjust their working and communication methods to the older adult's views on life.

Patient coaching in specialist consultations. Which patients are interested in a coach and what communication barriers do they perceive?

OBJECTIVE: To characterize patients interested in support by a patient coach to guide them in medical specialist consultations. METHODS: We compared 76 patients interested in a patient coach with 381 patients without such an interest, using a representative panel of patients with a chronic disease in the Netherlands. Independent variables were demographic factors, socio-economic status, perceived efficacy in patient-provider interaction, communication barriers, health literacy, (duration and type of) disease(s) and activation level. RESULTS: In univariate analyses, patients who are interested in a coach were significantly older, had lower health literacy skills and less self-efficacy and, overall, experienced more communication barriers (>4), than patients without such interest (1-2 barriers). Multivariate analyses indicated three communications barriers as determinants of patient interest in a coach: feeling tense, uncertainty about own understanding, and believing that a certain topic is not part of a healthcare providers' task. CONCLUSION: Patients interested in a coach perceive specific barriers in communicating with their medical specialist. In addition, patients who are > = 65 years, have lower health literacy and low self-efficacy may have interest in a coach. PRACTICE IMPLICATIONS: Characterizing patients interested in a patient coach facilitates identification of those who could benefit from such a coach in clinical practice.

Shared Decision Making About Housing Transitions for Persons With Dementia: A Four-Case Care Network Perspective.

BACKGROUND: Persons with dementia (PWDs) and their caregivers often face difficult housing decisions, that is, decisions about their living arrangements, in which the perspectives of all members of the care network should be involved. OBJECTIVE: We performed a qualitative data analysis to assess the extent to which housing decisions for PWDs with their formal and informal caregivers correspond to an interprofessional shared decision making (IP-SDM) approach, and what light this approach sheds on their experiences with decision making. RESEARCH DESIGN AND METHODS: We used the IP-SDM model to content-code and analyze data from 4 care networks, each consisting of a PWD, 2 informal and 2 formal caregivers. RESULTS: Decision making in all networks corresponded to most IP-SDM elements, but never included all network members. Decision making was guided by the wishes of the PWD, but their actual involvement decreased over time. DISCUSSION: Results show that while the IP-SDM model was helpful, the options change with cognitive decline and moving to a nursing home can become inevitable in spite of preferences. IMPLICATIONS: Timely and honest communication helps to mitigate the distress of deciding against patient preferences, as could advance care planning about future housing transitions.

Nurturing gerontology students' intrinsic motivation to cocreate: The design of a powerful learning environment.

Professionals such as gerontologists play an important role in the design, development and implementation of age-friendly services. and products, by using working methods and principles of co-creation. A Dutch undergraduate applied gerontology programme aims to train students in the why, how and what of co-creation. The degree to which students are intrinsically motivated to develop competencies depends on how their psychological needs are met. These needs are autonomy, an awareness of competence and a sense of relatedness, as described in the self-determination theory. To nurture the intrinsic motivation of the applied gerontology students, a realistic, powerful learning environment called the Living Lab Applied Gerontology was designed and implemented. The aim of this paper is to present the design of this powerful learning environment and to discuss its value for nurturing the students' intrinsic motivation for co-creation. Based on a focus group with eight students, we identify directions for further research and development of living labs.