Dementia In Research Research Articles

Strategies to improve recruitment of people with dementia to research studies

Background Low participation in research is one of the key challenges to advancing understanding of dementia, and improving the care and treatment of those who live with this condition. Nurses and nurse researchers play a vital role in recruiting people with dementia to studies, as several countries including the United States and the United Kingdom set national targets and develop initiatives to encourage more people with dementia to take part in research. Aim To highlight the challenges to recruiting people with dementia to studies, and to identify strategies that nurses, and in particular, nurse researchers can use for overcoming them. Our focus is primarily on the role of nurses in recruiting people with dementia to dementia studies, but much of the discussion will apply to other health professionals involved in the recruitment of people with dementia to research more generally. Discussion Challenges discussed include a lack of awareness about research participation opportunities and a suitable study partner. We discuss how the nurses’ role is to ensure that recruitment practices are personalised and responsive to participants’ needs and situation, rather than target driven. The notion of responsible research is used to anchor the discussion. Conclusion Increasing the participation of people with dementia in research is a global priority. Nurses and nurse researchers play an important role in ensuring that people who take part in research have an optimal research experience. Implications for practice: Recruiting people with dementia to research studies is a national priority in many countries. With a greater understanding of the challenges involved and strategies that can be used to overcome them, nurses can have an effective role in the recruitment process and research experience.

The impact of younger-onset dementia on relationships, intimacy, and sexuality in midlife couples: a systematic review.

The impact of dementia on relationships, intimacy, and sexuality has been documented in later life couples. However, little is known about the experiences of couples living with younger-onset dementia. The aim of this systematic review was to analyze the literature describing the impact of younger-onset dementia on relationships, intimacy, and sexuality in midlife couples. A systematic literature search was conducted in July 2016 for relevant research papers. Five databases were searched: Web of Science, PsycINFO, MedLine, Scopus, and CINAHL. A quality appraisal checklist was used to assess the methodological quality of included studies. Eleven studies were identified that explored relationships, intimacy, and sexuality from the perspective of the spouse, the person with dementia or both members of the dyad. Several themes were identified including shifts in roles and responsibilities, declines in relationship quality, changes in identity, and self-esteem, increasing social isolation and loneliness, shifts in intimacy, and changes in sexual activity. Many of the reviewed studies were subject to a range of methodological issues including small sample sizes, small number of studies, and a reliance on the perspective of only one member of the dyad. Future research should follow couples longitudinally to gain a clearer picture of the impact of younger-onset dementia on the couple relationship over time. The inclusion of people living with younger-onset dementia in research will assist in developing a deeper understanding of the experiences of the individual and dyad.

The lived experiences of dementia in married couple relationships.

Background and purpose There are a growing number of couples who become affected by dementia as one partner develops the condition while the other becomes a carer. However, our knowledge about the experiences of couples affected by dementia is limited. Very little knowledge about the impact of dementia on couples has been gained in previous research. The aim of this study was to explore the dyadic perspective of dementia within a couple relationship. Methodology: Six couples were interviewed about their experience of living with dementia. Interview transcripts were subjected to interpretive phenomenological analysis to identify themes across participants’ accounts. Results and conclusion: The analysis revealed three themes: (i) maintaining a bond, (ii) change and adjustment, and (iii) the challenge of coping. The results highlight the importance of studying the dyadic perspective and including people with dementia in research. Couples experienced an enduring commitment to one another as they adjusted to life with dementia.

Acceptance and usability of a home-based monitoring tool of health indicators in children of people with dementia: a Proof of Principle (POP) study.

BackgroundLarge-scale cohort studies are needed to confirm the relation between dementia and its possible risk factors. The inclusion of people with dementia in research is a challenge, however, children of people with dementia are at risk and are highly motivated to participate in dementia research. For technologies to support home-based data collection during large-scale studies, participants should be able and willing to use technology for a longer period of time.ObjectiveThis study investigated acceptance and usability of iVitality, a research platform for home-based monitoring of dementia health indicators, in 151 children of people with dementia and investigated which frequency of measurements is acceptable for them.MethodsParticipants were randomized to fortnightly or monthly measurements. At baseline and after 3 months, participants completed an online questionnaire regarding the acceptance (Technology Acceptance Model; 38 items) and usability (Post-Study System Usability Questionnaire; 24 items) of iVitality. Items were rated from 1 (I totally disagree) to 7 (I totally agree). Participants were also invited to take part in an online focus group (OFG) after 3 months of follow-up. Descriptive statistics and both two-sample/independent and paired t-tests were used to analyze the online questionnaires and a directed content analysis was used to analyze the OFGs.ResultsChildren of people with dementia accept iVitality after long-term use and evaluate iVitality as a user-friendly, useful, and trusted technology, despite some suggestions for improvement. Overall, mean scores on acceptance and usability were higher than 5 (I somewhat agree), although the acceptance subscales “social influence” and “time” were rated somewhat lower. No significant differences in acceptance and usability were found between both protocol groups. Over time, “affect” significantly increased among participants measuring blood pressure fortnightly.ConclusioniVitality has the potential to be used in large-scale studies for home-based monitoring of health indicators related to the development of dementia.

What is good communication for people living with dementia? A mixed-methods systematic review.

Many strategies have been recommended to support caregivers in communicating with people who live with dementia. However, less is known about what makes communication a good and meaningful experience from the perspective of people with dementia. Understanding this may enhance the person with dementia's sense of connectedness, strengthen their relationships, and facilitate person-centered care. The current review aimed to evaluate research that examined experiences of communication in people living with dementia. Studies that examined reports provided by people with dementia, healthcare professionals, and family caregivers were included. A mixed-methods systematic review was conducted using PsychINFO, MEDLINE, and EMBASE databases. After applying the eligibility criteria, 15 studies were included. Although eight of these recruited people with dementia, only one focused on their perspectives of communication experiences and the remaining studies focused on the perspectives of family caregivers and healthcare professionals. These studies either explored experiences without suggestions of communication methods, "open exploration," or through examining experiences of strategies, "exploration of strategies." A significant theme was around communication difficulties that affected interpersonal relationships and activities of daily living. Conversely, personhood strategies and a strong underlying relationship were believed to facilitate communication. The one study that examined the perspectives of people with dementia emphasized the importance of retaining valued relationships and feeling respected during communication. The need to involve people with dementia in research, particularly around their experiences of communication, is evident. Such research would be imperative for facilitating person-centered care, strengthening social relationships, and informing training programs.

Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform.

Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In Australia, participation in research by people with cognitive impairment is governed by a national ethics statement and a patchwork of state and territorial laws that have widely varying rules. We contend that this legislative variation precludes a consistent approach to research governance and participation and hinders research that seeks to include people with impaired capacity. In this paper, we present key ethical principles, provide a comprehensive review of applicable legal rules in Australian states and territories, and highlight significant differences and ambiguities. Our analysis includes recommendations for reform to improve clarity and consistency in the law and reduce barriers that may exclude persons with dementia from participating in ethically approved research. Our recommendations seek to advance the national decision-making principles recommended by the Australian Law Reform Commission, which emphasize the rights of all adults to make their own decisions and for those with impaired capacity to have access to appropriate supports to help them make decisions that affect their lives.

Research involving people with dementia: a literature review

PurposeThe purpose of this paper is to review existing literature that addresses involving people with dementia in research, and how this can relate to involving people with dementia in research as co-researchers.Design/methodology/approachThe approach takes the form of a literature review.FindingsDespite a growing drive for patient and public involvement in research, people with dementia are often still excluded from many areas of research, and are rarely given the opportunity to act as co-researchers. Existing principles focussing on how people with dementia can effectively and safely be involved in research as participants (including ethical considerations, enabling participation, support for people with dementia and the involvement of family members and carers) can also be applied to enabling people with dementia to be actively involved with research as co-researchers. The benefits of involving people with dementia in research are also explored.Originality/valueThis paper adds to the small body of literature that addresses involving people with dementia in research as co-researchers, and advocates for ongoing research and development in this area.

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

ABSTRACTThis 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’.Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research.

Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies.

Developing strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of dementia policy and practice. This literature review synthesizes and critically appraises different approaches to promote the safe participation of people with dementia in qualitative research. Two databases were searched for articles that discuss the methodological or ethical aspects of qualitative research involving people with dementia. We did not focus on informed consent or ethical review processes as these have been reviewed elsewhere. Key issues that impact participant safety include: language, gatekeepers, the research relationship, communication, dealing with distress, knowledge dissemination, and researcher skills. By synthesizing different approaches to safety and highlighting areas of debate, we hope to advance discussion and to contribute to the development of inclusive research methods.

Involving people with dementia in developing an interactive web tool for shared decision-making: experiences with a participatory design approach

Purpose: The aim of this study was at gaining insight into the participatory design approach of involving people with dementia in the development of the DecideGuide, an interactive web tool facilitating shared decision-making in their care networks.Method: An explanatory case study design was used when developing the DecideGuide. A secondary analysis focused on the data gathered from the participating people with dementia during the development stages: semi-structured interviews (n = 23), four focus group interviews (n = 18), usability tests (n = 3), and a field study (n = 4). Content analysis was applied to the data.Results: Four themes showed to be important regarding the participation experiences of involving people with dementia in research: valuable feedback on content and design of the DecideGuide, motivation to participate, perspectives of people with dementia and others about distress related to involvement, and time investment.Conclusions: People with dementia can give essential feedback and, therefore, their contribution is useful and valuable. Meaningful participation of people with dementia takes time that should be taken into account. It is important for people with dementia to be able to reciprocate the efforts others make and to feel of significance to others.Implications for RehabilitationPeople with dementia can contribute meaningfully to the content and design and their perspective is essential for developing useful and user-friendly tools.Participating in research activities may contribute to social inclusion, empowerment, and quality of life of people with dementia.

Dementia research.

Involving people with dementia in research is important for improving our understanding about the condition, and for shaping services and treatments.

Visioning change: Co-producing a model of involvement and engagement in research (Innovative Practice).

The involvement of people living with dementia in research has traditionally been located in the realms of 'subject' or 'participant'. However, there has been an increase in demand for greater transparency by academic bidding teams (particularly within the UK) in demonstrating how people with a lived experience have been and will be involved in the research process. Located within the Economic and Social Research Council/National Institute for Health Research (ESRC/NIHR)-funded Neighbourhoods and Dementia Study (2014-2019), led by The University of Manchester (UK), this paper outlines the development of the CO-researcher INvolvement and Engagement in Dementia (COINED) Model, which was co-produced alongside three independent groups of people living with dementia: Open Doors, the Scottish Dementia Working Group and EDUCATE.

Reflections and Recommendations for Conducting In-Depth Interviews With People With Dementia.

Despite the importance and advantages of including people with dementia in research, there are various challenges for researchers and participants to their involvement. This article draws on the literature and experiences of a diverse group of authors, including a person with dementia, to provide recommendations about conducting research with people with dementia. Particular attention is given to in-depth interviews as a qualitative technique. More specifically, topics discussed include interview guide preparation, recruitment, obtaining consent/assent, conducting effective interviews, analysis and interpretation of data, effective communication of research findings, and reflections and recommendations for maintaining researcher and participant health. Given the current obstacles to participation in research of people with dementia, this is a timely article providing useful insights to promote improved outcomes using in-depth interviews.

Promoting participation of people with dementia in research.

Dementia is a neurodegenerative disorder that can have a severe effect on the quality of life of individuals with the condition, and can place considerable strain on informal carers and healthcare systems. Research is required to identify ways to prevent or delay the onset of dementia. The government is committed to dementia research, yet funding for dementia research is eclipsed by funding for research into other conditions. Moreover, dementia research can only progress if individuals with the condition participate in research studies. This article discusses barriers associated with research into dementia and describes a UK government initiative, Join Dementia Research, which supports research participation for people with dementia.

Interviewing people with dementia in hospital: recommendations for researchers

This article aims to: Discuss the inclusion of the perspectives of people with dementia in research. Consider the major challenges involved in the process of interviewing people with dementia. Provide recommendations for those involved in interviewing people with dementia in hospital. People with dementia are frequent consumers of health care and often have a poor experience in hospital but have been largely excluded from direct participation in research until recently. Limited understanding of the specific communication needs of people with dementia restricts access to the person's viewpoint. Recommendations for interviewers which consider the specific requirements of people with dementia are presented. This is a discursive article drawing on the experience of interviewing people with dementia in three separate studies. The conclusions that will be discussed are recommendations for researchers which were formulated following examination of the reflective journals written during the data collection phases of the studies and analysis of the data from the perspective of interviewer performance. Six main issues have been identified and discussed with reference to Habermas's theory of communicative action. Interviewing people with dementia requires specific skills including an ability to be emotionally sensitive and respectful of the person. This engagement can be challenging and complex for the interviewer. It is vital that genuine engagement and mutual recognition are established before the interview is attempted. A more meaningful research outcome is likely to be the result. The suggestions outlined here are relevant to a variety of people who are in contact with people with dementia in clinical settings. Developing the skills of researchers in this area needs a commitment by organisations to promote the inclusion of the perceptions of people with dementia in research and in discussions about their own care.

Reflections of a team approach to involving people with dementia in research.

The article reflects on the ways in which a person-centred approach was used to ensure that people with dementia were given an opportunity to participate in research. The authors discuss three key issues-the importance of including people with dementia in research, informed consent and the possibility of accidental disclosure of diagnosis. The study was an in-depth examination of the ways in which the cancer team manages patients with memory problems and patients with dementia, and the experiences of these patients and their families in accessing outpatient cancer treatment and care in Wales. The study findings will be reported elsewhere. This article aims to add to the small body of existing knowledge within the literature that describes the experiences of researchers in actively involving people with dementia in research.

Ethical issues when involving people newly diagnosed with dementia in research.

To discuss the methodological and ethical review challenges encountered by researchers who want to enable people with dementia to be involved in research. There has been increasing recognition of the importance of involving people with dementia in research. However, an argument has centred on the protection of these vulnerable clients versus their freedom to be involved as participants in research. People with dementia do have the right to have their experiences explored. Involving this client group in research is essential to gain a true understanding of their needs. The lead author's experience of conducting a study in which people newly diagnosed with dementia were recruited as research participants. An interpretive phenomenological approach was adopted during this qualitative study, with data collected by means of one to one interviews with people newly diagnosed with dementia. This study was completed within the set timeframe, but a large part of the work was spent gaining ethical approval. This meant that the timeframe of the study period was reduced and as a result, it was only possible to recruit three participants. However, people with dementia are perhaps one of the most vulnerable client groups and it is only right that they should not be subjected to harm. Ethical review is an important part of research. Meeting the ethical requirements of research involving people with dementia requires time and careful preparation to ensure that researchers safeguard the interests of this vulnerable client group, while also allowing the participants the opportunity to exercise their autonomy to their fullest potential. Conducting research that involves people with dementia may be time consuming, but it is only fair that this client group are afforded the freedom to be involved in research. This small time-limited study points to the need for larger pilot studies to hear from individuals what needs they have following a diagnosis of dementia.

Personhood: Including the Chinese Person with Dementia in Research, Policy, and Practice

Literature indicates that dementia caring is difficult and challenging. This literature is scarce for ethnic minorities and lacking most acutely, despite its huge diasporic population, for the Chinese group. Where available, the focus is mostly on the Chinese carer, with the regular absence of the person with dementia and the interactions of the care-partners. From an interpretive phenomenological perspective, this in-depth case study of four Chinese immigrant families takes Kitwood’s (1997) personhood approach to include the Chinese person with dementia. Findings show how this inclusion is possible and important for better understanding and effecting dementia care in research, policy, and practice.

Core principles for involving people with dementia in research: innovative practice.

The Scottish Dementia Working Group Research Sub-group is part of the Scottish Dementia Working Group, an internationally renowned campaigning group of people with dementia. We co-created our core principles for involving people with dementia in research between September and December 2013. The principles address six areas: (i) how people with dementia are valued and involved in research, (ii) lived experience as valid knowledge, (iii) physical and emotional safety, (iv) accessibility of all aspects of research, (v) training for researchers and (vi) the impact of our experiences of time on research processes. Through our core principles, we challenge researchers across all disciplines to re-consider how we and other people with dementia are involved in research as well as how knowledge in dementia research is created.

Privileging place: Reflections on involving people with dementia in a residency

Although attention is paid to involving people with dementia as collaborators in research, the issue of place - where involvement actually occurs - has been neglected. This is significant because we know from the academic literature that places can adversely affect social relations and a person's ability to participate as equal partners. This paper privileges place and documents our experiences of running residencies in the English Lake District with people with dementia - Houston, Gardiner and Wallace all have some form of dementia. In doing so we provide a model to reference for involving people with dementia in research and knowledge production, while simultaneously strengthening the evidence base for the residency as a method for participatory research. People with dementia participated in two residencies to co-produce a touring exhibition and educational resource as part of a research dissemination project. We found that by privileging place a more equitable, productive, healthier, and respectful way of involving people with dementia as collaborators in research dissemination could be realised. The project has wider implications for the involvement of people with dementia in not only research, but also public consultations, service evaluations, and policy-related work.