Experiences and preferences for advance care planning following a diagnosis of dementia: Findings from a cross-sectional survey of carers.

BACKGROUND: Future medical and financial planning is important for persons with dementia given the impact of the disease on capacity for decision making. AIMS: To explore from the perspective of carers of persons with dementia: (1) Participation in future medical and financial planning by the person they care for, including when planning was undertaken and the characteristics associated with having an advance care directive completed; (2) The type of healthcare providers who discussed advance care planning following diagnosis; and (3) Preferences for timing of discussions about advance care planning following diagnosis. METHODS: Recruitment and data collection took place between July 2018 and June 2020. Carers of persons with dementia aged 18 years and older were mailed a survey. Participants completed questions regarding completion of various future planning documents by the person they support, including time of completion and who discussed advance care planning following diagnosis. Participants were presented with information about the benefits and consequences of early and late discussions of advance care planning and asked when discussions about advance care planning were best initiated. RESULTS: 198 carers participated. Most participants were female (74%) and had been a carer for more than 2 years (82%). Most participants reported that the person with dementia they support had made a Will (97%) and appointed an Enduring Guardian (93%) and Enduring Power of Attorney (89%). Only 47% had completed an advance care directive. No significant associations were found between characteristics of persons with dementia and completion of an advance care directive. Geriatricians (53%) and GPs (51%) most often discussed advance care planning following diagnosis. Most carers thought that discussions about advance care planning should occur in the first few weeks or months following diagnosis (32%), at the healthcare provider's discretion (31%), or at the time of diagnosis (25%). CONCLUSIONS: More than half of persons with dementia do not have an advance care directive. There is variability in preferences for timing of discussions following dementia diagnosis.

Depression and thoughts of self-harm and suicide among people living with dementia: results of a cross-sectional survey.

BACKGROUND: Depression is common among people with dementia. Despite most people with dementia living in the community, there have been few investigations of self-reported depressive symptoms and suicidal ideation among community-dwelling people with dementia in Australia. This study aimed to explore the proportion of people with mild, moderate and severe levels of depressive symptoms, and suicidal ideation among a sample of people living with dementia in Australia. Correlates of reporting depressive symptoms were also explored. METHODS: Adults diagnosed with dementia by a medical professional who were English speaking and community-dwelling were asked to complete a paper and pencil survey. Those who were unable to provide independent consent were excluded. Depression was assessed using the Geriatric Depression Scale -15, and suicidal ideation was assessed using two study-specific items. Multivariable analyses examined quality of life, unmet needs and sociodemographic factors associated with having a score of five or more on the Geriatric Depression Scale-15. RESULTS: Ninety-four people participated in the study. Thirty-seven percent (n = 35) reported some level of depressive symptoms, with most of these (21%, n = 20) classified as having mild depressive symptoms. Five participants (5%) reported they had had thoughts of being better off dead or hurting themselves, while three (3%) reported having had a plan to end their life. For each additional unmet need, the odds of being depressed increased by 25%(P < 0.001). For each point increase in quality of life, the odds of being depressed decreased by 48% (P < 0.001). CONCLUSIONS: The high proportion of people with dementia who report depressive symptoms suggests the need to routinely assess depressive symptoms among this group. There may also be benefits in assessing unmet needs and addressing these where possible as part of an approach to reducing depression among people living with dementia in the community.

Dementia is the second most feared condition among Australian health service consumers: results of a cross-sectional survey.

Fear of disease may act as a barrier to screening or early diagnosis. This cross-sectional survey of 355 people attending outpatient clinics at one Australian hospital found that cancer (34%) and dementia (29%) were the most feared diseases. Participants aged 65 years and over feared dementia the most.

Effectiveness and cost-effectiveness of a digital health intervention to support patients with colorectal cancer prepare for and recover from surgery: study protocol of the RecoverEsupport randomised controlled trial.

INTRODUCTION: Surgery is the most common treatment for colorectal cancer (CRC) and can cause relative long average length of stay (LOS) and high risks of unplanned readmissions and complications. Enhanced Recovery After Surgery (ERAS) pathways can reduce the LOS and postsurgical complications. Digital health interventions provide a flexible and low-cost way of supporting patients to achieve this. This protocol describes a trial aiming to evaluate the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention in decreasing the hospital LOS in patients undergoing CRC surgery. METHODS AND ANALYSIS: The two-arm randomised controlled trial will assess the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention compared with usual care (control) in patients with CRC. The intervention consists of a website and a series of automatic prompts and alerts to support patients to adhere to the patient-led ERAS recommendations. The primary trial outcome is the length of hospital stay. Secondary outcomes include days alive and out of hospital; emergency department presentations; quality of life; patient knowledge and behaviours related to the ERAS recommendations; health service utilisation; and intervention acceptability and use. ETHICS AND DISSEMINATION: The trial has been approved by the Hunter New England Research Ethics Committee (2019/ETH00869) and the University of Newcastle Ethics Committee (H-2015-0364). Trial findings will be disseminated via peer-reviewed publications and conference presentations. If the intervention is effective, the research team will facilitate its adoption within the Local Health District for widespread adaptation and implementation. TRIAL REGISTRATION NUMBER: ACTRN12621001533886.

Prevalence and type of unmet needs experienced by carers of people living with dementia.

OBJECTIVES: Carers of people with dementia experience significant physical, emotional, and social burdens. Needs assessment can provide important information to assist services in providing support to carers to reduce these burdens. However, few studies have examined the prevalence of unmet needs experienced by carers of people with dementia using a quantitative instrument. This study aimed to examine the prevalence and type of unmet needs experienced by carers of people with dementia in Australia. METHODS: This was a cross-sectional survey of carers providing support to community-dwelling individuals living with dementia. Carers were recruited through geriatric clinics, aged care providers, support services and community organisations. Consenting carers completed a survey including an 80-item study-specific unmet needs instrument for carers (UNI-C) and sociodemographic characteristics. Descriptive statistics were used to identify the most prevalent unmet needs reported by carers. RESULTS: A total of 169 carers (response rate 47%) completed the survey. Most (87%) carers reported at least one unmet need. Carers reported a median of 16.0 (IQR = 24.0; max = 58) out of a possible 80 unmet needs. The most frequently endorsed unmet needs spanned a range of areas including emotional wellbeing, accessing health and aged care services, managing apathy, and finding information. CONCLUSION: This study highlighted that a large proportion of carers experience unmet needs associated with caring for someone with dementia. Developing and rigorously testing interventions to meet carers' commonly reported unmet needs are warranted.Supplemental data for this article is available online at https://doi.org/10.1080/13607863.2022.2053833 .

Perceptions of community members in Australia about the risk factors, symptoms and impacts of dementia: A cross-sectional questionnaire study.

OBJECTIVES: Ensuring that the Australian public has an accurate understanding of the characteristics of dementia may assist in improving timely detection of dementia. This cross-sectional questionnaire study aimed to examine community members' perceptions of the risk factors, symptoms and impacts of dementia. METHODS: Participants were recruited from outpatient units at a major regional hospital and were aged at least 18 years, a patient or an accompanying support person, did not have a dementia diagnosis, had sufficient English knowledge and were well enough to complete a survey. Participants completed a web-based survey on a touchscreen computer including items exploring knowledge of dementia risk factors, symptoms and perceived impacts if they or a loved one had dementia. Counts and proportions were calculated and perceived impacts of dementia were compared for self versus loved one using a χ2 test. RESULTS: Of 353 eligible individuals approached, 208 consented and were included in the study. Between 30% and 61% (n = 62-127) of participants believed modifiable factors such as high alcohol consumption and high blood pressure were associated with increased risk of dementia. While a majority of participants (87-96%; n = 164-181) identified memory-related symptoms, less than one-third recognised behavioural symptoms. Participants were more likely to identify emotional and practical impacts compared to physical or social impacts as most difficult if they or a loved one had dementia. CONCLUSIONS: There remains a need for increased community education to address knowledge gaps regarding modifiable risk factors, behavioural symptoms and potential impacts of dementia on the individual diagnosed and their carers.

Advance planning for research participation: Time to translate this innovation into practice.

OBJECTIVES: Advance planning for research is a process that involves thinking about, discussing and expressing preferences for taking part in research during future periods of incapacity. The process may include making an advance research directive and naming trusted people to be involved in decisions about research participation. Advance research planning could help to overcome barriers to including people with dementia in research. To encourage innovation in this area, this article presents recommendations informed by a stakeholder workshop that brought together consumer representatives and representatives active in dementia, ageing and health-related research, policy-making, advocacy and service delivery in health and aged care. METHODS: An online workshop where 15 stakeholders shared perspectives and suggestions for implementing advance research planning, with a focus on research involving people with dementia. RESULTS: Raising awareness of advance research planning requires multi-faceted strategies. Training and resources are needed for researchers, ethics committees and organisations regarding this form of advance planning and the use of research directives. Like any form of advance planning, planning ahead for research must be a voluntary, informed and person-centred process. There is a lack of uniform legal rules on research involving people who lack the capacity to consent; however, advance research directives could, in principle, inform decisions about research participation. CONCLUSIONS: As a matter of law, policy and practice, people are encouraged to plan ahead in many areas of their life. Research planning has been relatively neglected, and the recommendations offered here aim to encourage innovation in research and implementation in this area.

Perceptions of people living with dementia regarding patient-centred aspects of their care and caregiver support.

OBJECTIVE: This study examined the perceptions of a sample of Australian people living with dementia regarding the person-centred care and support they received from health professionals and family. METHODS: Community-dwelling people living with dementia were invited to complete a cross-sectional survey. RESULTS: Seventy-one people participated in the study. More than 90% agreed that health professionals explain who they are, why they are seeing them and listen to what they have to say; 63% agreed that health professionals ask how they would like to be involved in decisions about treatment; 78% agreed health professionals mainly speak to them rather than anyone accompanying them; 76% reported their family 'support you to do tasks by yourself', and 36% indicated that family caregivers 'get frustrated with you'. CONCLUSIONS: Results suggest that people living with dementia have a positive perception of the care and support they receive. Improvements may be needed in how health professionals speak directly to the person living with dementia when exploring how they would like to be involved in treatment decisions. Family caregivers may benefit from education and support on how they can manage frustrations and assist the person they support to maintain their independence.

Perceived Provision of Perioperative Information and Care by Patients Who Have Undergone Surgery for Colorectal Cancer: A Cross-Sectional Study.

BACKGROUND: Active patient participation in preparation and recovery from colorectal cancer surgery can be facilitated by timely information and care and may improve patient wellbeing and reduce hospitalizations; Methods: We aimed to identify gaps in perioperative information and care by asking colorectal cancer surgical patients to retrospectively report on their perceptions of care via a cross-sectional survey; Results: Overall, 179 (64% consent rate) patients completed one of two 64-item surveys exploring their views of 'optimal care' or their experiences of 'actual care'. In total, 41 (64%) aspects of care were endorsed as optimal. Of these, almost three-quarters (73%) were received by most patients (80% or more). Gaps in care were identified from discrepancies in the endorsement of optimal versus actual survey items. Of the 41 items identified as representing 'optimal care', 11 items were received by fewer than 80% of patients, including the provision of information about the impact of surgical wait-times on cancer cure (69%); pre-habilitation behaviors to improve health (75%); the type of questions to ask the health care team (74%); impact of pain medications on bowel movements (73%); how to obtain medical supplies for self-care at home (67%); dietary or exercise advice after discharge (25-31%); and emotional advice after discharge (44%). CONCLUSIONS: These gaps represent patient-centered priorities and targets for supportive interventions.

Experiences of Patient-Centered Care Among Older Community-Dwelling Australians.

Background: Older adults represent the largest consumers of health care. It is, therefore, important that they receive adequate patient-centered care to empower them to be proactive in managing their health. Aims: This study examined the proportion of older community-dwelling individuals who report receiving patient-centered care during healthcare consultations. Methods: A cross-sectional study was conducted with 117 clients of an Australian aged care provider. Clients completed a survey examining their perceptions of whether they received patient-centered care (11-items) from healthcare professionals. Results: The mean number of patient-centered care items reported was 8.7 (±3.1). Speaking to the patient with respect was the item most often reported to be patient-centered (94%). Asking patients about treatment goals or expectations (62%) and how involved they would like to be in treatment (67%) were the items least reported to be patient-centered. Conclusion: Older adults perceived some important aspects of care were not provided with a patient-centered approach. There is a need to improve healthcare providers' elicitation of older patients' care preferences, enabling patients to determine their level of involvement in their health management.

Prevalence and Type of Unmet Needs Experienced by People Living with Dementia.

BACKGROUND: Accurately identifying the unmet needs of community-dwelling people with dementia allows targeted support to be provided to assist these individuals to stay at home. OBJECTIVE: We developed a self-report instrument to identify the unmet needs of community-dwelling people with dementia and used this to explore the prevalence and type of unmet needs present in this population. METHODS: This was a cross-sectional survey of people with dementia living in the community in Australia. Participants were recruited from geriatric clinics, respite centers, aged care providers, and carers attending support groups. Eligible people with dementia were provided with a study information pack and survey which included the self-report Unmet Needs Instrument for Dementia (UNI-D), sociodemographic characteristics and survey acceptability. RESULTS: The UNI-D contained 26 items across 5 domains and demonstrated acceptable internal consistency, face and construct validity, and acceptability. Ninety-five eligible participants completed the survey (response rate 35%) with 85% identifying at least one unmet need (median = 4; IQR = 1-9). The items most frequently endorsed included needing more help with remembering things (64%), finding possible treatments for dementia (44%), understanding who to contact regarding a problem or concern related to dementia (36%), and to see friends and family more often (33%). CONCLUSION: The UNI-D is a promising tool to identify the self-reported needs of people with dementia. The development and rigorous testing of interventions targeting unmet needs related to health and wellbeing, dementia support, and meaningful activities appears warranted.

Optimising diagnosis and post-diagnostic support for people living with dementia: geriatricians' views.

BACKGROUND: Providing a timely and accurate diagnosis of dementia and delivering appropriate support following a diagnosis are essential to allow individuals and their families to plan for the future. Recent studies suggest that provision of diagnosis and post-diagnosis support is suboptimal. This study explored geriatricians' views about strategies to improve quality of care across these domains. METHODS: An anonymous online survey of geriatricians and advanced trainees in one Australian state was conducted. An Expert Advisory Group of geriatricians, behavioural scientists and consumers proposed strategies to improve quality of care in relation to diagnosis and post-diagnosis support for people with dementia, which formed the survey items. Potential strategies were guided by, but not limited to, dementia and chronic care guidelines. Participants were asked the extent to which they agreed that implementing each of the proposed strategies would improve the quality of dementia care. RESULTS: Of 59 participants (response rate 42%), all agreed that improving accessibility of geriatricians would improve the accuracy and timeliness of diagnosis. Over 90% were supportive of strategies to improve capacity of general practitioners to accurately diagnose dementia. Between 97-100% agreed that information provided following diagnosis should encompass symptom progression, treatments, psychological supports, and advance care planning. Just over two-thirds thought that life expectancy should be discussed at this time. There were high levels of support for strategies already included in existing dementia care guidelines, however geriatricians also agreed with a range of possible strategies not currently included in guidelines. CONCLUSIONS: Geriatricians perceive that timeliness and accuracy of dementia diagnosis may be improved by increasing access to geriatricians and training general practitioners in diagnosing dementia. They also believe it is appropriate to provide information at the time of diagnosis across a comprehensive range of areas, including potentially sensitive topics such as advance care planning. Future studies should explore the views of other groups of health care providers and consumers about these approaches. The strategies proposed should be considered for inclusion in future dementia care guidelines.

Effectiveness of information and communications technology interventions for stroke survivors and their support people: a systematic review.

PURPOSE: To examine the effectiveness of self-directed, off-the-shelf information and communications technology (ICT)-based interventions in improving the quality of life, physical and psychosocial outcomes of community-dwelling stroke survivors and their support persons (SP). METHODS: Medline, EMBASE, CINAHL and Cochrane databases were searched (2006-19th June 2020) for randomized controlled trials, controlled trials, controlled before and after studies, or interrupted time series studies that met the eligibility criteria. The quality of included studies was assessed. Interventions effectiveness was narratively synthesized, as was participant adherence and acceptability. RESULTS: Seventeen studies were eligible. Three studies were rated as low risk of bias across all methodological review criteria. Nine studies reported on interventions delivered using self-directed computer programs, two studies utilized internet or web-based support programs and six studies used mobile phone interventions. Few studies reported on intervention acceptability or adherence. Those that did generally reported good acceptability, although adherence was variable. Fifteen studies reported significant positive effects for at least one outcome examined including stroke-specific outcomes, physical outcomes, behavioural outcomes and health service use. No studies found an effect for psychosocial wellbeing. CONCLUSION: ICT-based interventions are likely to provide benefit to stroke survivors and their SPs. However, there is a need for further robustly designed intervention studies that include larger sample sizes, longer follow-up, and outcomes for SPs.Implications for RehabilitationICT-based interventions with minimal clinician supervision are likely to provide some benefits to stroke survivors and their SPs.There is insufficient evidence to allow recommendations to rehabilitation professionals regarding the type, length and intensity of ICT-based interventions for specific targeted outcomes.Rehabilitation professionals should use professional judgement prior to recommending ICT-based interventions to stroke survivors and their SPs.

Prioritising national dementia guidelines for general practice: A Delphi approach.

OBJECTIVES: Australian guidelines for dementia cover 109 recommendations for dementia care. Knowing which recommendations to implement poses a challenge for general practitioners (GPs). This study aimed to gather general practice perspectives of priority recommendations for GPs in their practice. METHODS: To explore which recommendations are most important and those requiring the greatest support in GP implementation, a Delphi study was conducted. Thirty-six GPs, 4 practice nurses and 1 medical services director completed two rounds of email questionnaires. RESULTS: Recommendations requiring support for GP implementation relate to early assessment of behavioural and psychological symptoms; mental health interventions tailored to the person's preferences and abilities; language and cultural barriers in access to information and services; and cognitive and learning needs in treatment delivery. CONCLUSIONS: It is critical to understand where support may be needed for GPs to successfully implement recommendations to improve care provided to people with dementia and their carers.

Advance Research Directives: Dementia Researchers' Views on a Prototype Directive and Implementation Strategies.

Advance research directives (ARDs) enable people to document preferences for future research participation in the event of incapacity. This article reports on interviews with 11 dementia researchers in Australia that focused on the content of a prototype ARD and processes for making and using ARDs. Participants agreed that an ARD template should provide information to explain research and the rationale for making a directive, allow the person to nominate trusted individuals to be involved in future decisions, and record the person's general willingness or unwillingness to be involved in research. Providing a list of various research activities elicits preferences and risk tolerances in more detail. Priority groups for ARD implementation include people with a diagnosis involving progressive cognitive impairment and people interested in research. Researchers and health and legal professionals have a role in promoting ARDs. Our findings suggest that, as a voluntary strategy, ARDs could promote appropriate inclusion in research.

Attitude toward dementia and preferences for diagnosis in Japanese health service consumers.

BACKGROUND: Being diagnosed with dementia is a confronting experience for any individual and their caregiver. However, a diagnosis provides opportunity for future preparation for management of the condition. This study investigated attitudes toward dementia and preferences for diagnosis among a sample of health service consumers in Japan. METHODS: Participants were patients or accompanying support persons (n = 217) who visited the specialty outpatient clinic of four hospital departments. The survey was conducted using an iPad with answers sent automatically to a secure server. The survey included items about the participants' most feared diseases and the reasons behind those fears, estimates of dementia prevalence in Japan, and preferences regarding a diagnosis of dementia and the reasons for their preference. RESULTS: The most feared disease was cancer (43.8 %), followed by dementia (18 %). Those selecting dementia most commonly reported practical, emotional and social impacts as the reasons why they most feared this condition. Almost all participants preferred to know the diagnosis of dementia as soon as possible for themselves, with significantly fewer preferring their spouse to know as soon as possible if they had dementia (95.9 % for self vs. 67.5 % for partner/spouse, p < 0.001). On average, participants estimated that 18.1 % of Japanese people are diagnosed with dementia by age 65, while they thought that 43.7 % of Japanese people are diagnosed with dementia by age 85. CONCLUSIONS: The findings highlight a need for community education about the significant impacts of dementia on the lives of individuals and their caregivers. People were more reluctant for their spouse to receive a diagnosis as soon as possible if they had dementia. Physicians should sensitively disclose diagnosis and ensure they involve both the patient and their relatives in discussions about diagnosis disclosure.

Perceived problems with involvement in decision making about breast cancer treatment and care: A cross-sectional study.

OBJECTIVE: To examine perceived problems with involvement in medical decision making among people with breast cancer from various phases of the cancer care trajectory. METHODS: Breast cancer outpatients (n = 663) from 13 treatment centres completed a survey of perceived involvement in treatment and care decisions in the last month, psychological distress, demographic and clinical factors. A subsample (n = 98) from three centres completed a follow-up survey on preferred and perceived treatment decision making roles. RESULTS: Overall, 112 (17 %) of 663 respondents from 13 oncology centres had experienced problems with involvement in decision making about their treatment and care in the last month, and of these, 36 (32 %) reported an unmet need for help with this problem. Elevated psychological distress was associated with 5.7 times the odds of reporting this problem and 6.6 times the odds of reporting this unmet need in the last month. Among the follow-up subsample (n = 98), 39% (n = 38) reported discordance between preferred and perceived role in a major treatment decision. Psychological distress was not associated with this outcome. CONCLUSION: Psychological distress was significantly associated with recently experiencing problems with involvement in treatment and care decisions, but not with misalignment of preferred and perceived roles in prior major treatment decisions. PRACTICE IMPLICATIONS: There is a need to maintain support for patient involvement in healthcare decisions across the cancer care continuum.

Use of the supportive care framework to explore haematological cancer survivors' unmet needs: a qualitative study.

BACKGROUND: Some sub-types of haematological cancers are acute and require intensive treatment soon after diagnosis. Other sub-types are chronic, relapse over many years and require life-long cycles of monitoring interspersed with bouts of treatment. This often results in significant uncertainty about the future, high levels of depression and anxiety, and reduced quality of life. Little is known about how to improve care for haematological cancer survivors. This study explored qualitatively, in a sample of haematological cancer survivors, (i) their unmet needs experienced as a result of their disease and treatment; and (ii) strategies that may help address these needs. METHODS: Semi-structured interviews were conducted with 17 adult haematological cancer survivors. Data was analysed using qualitative content analysis. The Supportive Care Framework guided data collection and analysis. RESULTS: Participants had a mean age of 57 years (SD 13). Most were male (n = 10, 59%). Five themes emerged from the data: (i) changes in unmet needs across the care trajectory (with greatest unmet needs experienced soon after diagnosis, at discharge from hospital and with cancer recurrence); (ii) informational unmet needs requiring improved patient-centred communication; (iii) uncertainty about treatment and the future; (iv) coordinated, tailored and documented post-treatment care planning as a strategy for optimal care delivery; and (v) ongoing support services to meet psychosocial and practical unmet needs by involving peer support, less bureaucratic transport services and flexible work arrangements. CONCLUSIONS: To our knowledge, this is the first qualitative investigation using the Supportive Care Framework to explore unmet needs of haematological cancer survivors. Our findings offer fresh insights into this important area of study. Written, take-home care plans which provide simple but tailored guidance on where to seek additional support may help decrease uncertainty and feelings of vulnerability post-treatment for adult haematological cancer survivors. Future research should further develop and test strategies aimed at addressing unmet needs of haematological cancer survivors identified in this study.

Advance Research Directives: Legal and Ethical Issues and Insights from a National Survey of Dementia Researchers in Australia.

Advance research directives (ARDs) are a means by which people can document their wishes about research participation in the event of future incapacity. ARDs have been endorsed in some ethics guidelines and position statements, however, formal legal recognition is limited. A few empirical studies have investigated the views of researchers and other stakeholders on ARDs and tested strategies to implement such directives. To further knowledge in this area, we undertook a survey of dementia researchers in Australia (n= 63) to examine their views on ARDs. Most of the survey respondents (>80%) thought ARDs would promote autonomy in decision-making and enable opportunities for people with cognitive impairment to be included in research. Respondents indicated concern about directives not being available when needed (71%) and that ethics committees would not accept ARDs (60%). Few respondents had used ARDs, but a majority (from 57-80%) would be willing to offer ARDs for a range of research activities, such as observing behaviour and taking measures, blood samples or scans. Nearly all respondents (92%) agreed that current dissent should override prior wishes stated in an ARD. The survey findings are contextualised with attention to ethics guidelines, laws and practices to support advance research planning.

Ethical and legal aspects of research involving older people with cognitive impairment: A survey of dementia researchers in Australia.

People with dementia are under-represented in clinical research, in part due to the ethical and legal complexities of involving people in studies who may lack capacity to consent. Excluding this population from research limits the evidence to inform care. The attitudes and practices of researchers are key to the inclusion of people with dementia in research, however, there are few empirical studies on researchers' perspectives in this area. A cross-sectional study involved researchers in Australia who had experience in the ethical aspects of conducting dementia-related studies with human participants (n = 70). Data were collected via an online survey from November 2017 to January 2018. Most respondents (97%) agreed with the importance of including people at all stages of dementia in research, yet around three-quarters of respondents perceived ethical and legal rules and processes as unduly restrictive or time-consuming. Researchers reported variable practices in assessing prospective participants' capacity to consent to their studies. Various tools are used for this purpose, ranging from tools designed for research (eg, MacArthur Competence Assessment Tool for Clinical Research) to more general cognitive function screens (eg, Mini Mental State Exam). Few respondents (14%) routinely exclude people from studies who are unable to give their own consent, but instead seek permission from proxy decision-makers, such as legally appointed guardians or family carers. Respondents reported positive and negative outcomes of ethics review processes. Positive outcomes included strengthening the protections for participants with cognitive impairment while negative outcomes included delays and inconsistent decisions from different ethics committees. The findings suggest a need for improved strategies in the research context to assess and enhance the decision-making capacity of people with dementia to support appropriate opportunities for inclusion. Education for ethics committees, proxy decision-makers and other gatekeepers is also needed to reduce barriers to participation in research.