Disclosure Of Dementia Diagnosis Research Articles

Is the Invisibility of Dementia a Super-Power or a Curse? A Reflection on the SUNshiners' Questionnaire into the Public Understanding of Dementia as an Invisible Disability: A User-Led Research Project.

The SUNshiners group includes people in the early stages of dementia with an interest in dementia activism and research. The group found that despite the growing awareness of invisible disabilities, there is very limited research into the pros and cons of the invisibility of dementia. Our paper explores the SUNshiners research which stemmed from varied individual experiences of disclosing diagnoses. The group designed and developed a short survey to explore what the public knew about dementia and what they thought about the invisibility of dementia. A mixture of open- and closed-ended questions were used to gain meaningful data. A total of 347 people completed the survey (315 online and 32 paper-based), which was then co-analysed. The findings suggest that the majority of the public felt that the invisibility of dementia was negative; that knowing someone had dementia when first meeting them would be beneficial; that people living with dementia should maintain the right to vote; and that people living with dementia do not automatically require a consistent, regular carer. Common themes from the open-ended answers included capacity, severity of dementia, and access to support. The findings support the disclosure of dementia diagnosis; however, more action is needed to tackle stigmatised views, particularly as the SUNshiners felt that people do not have enough dementia education to support a positive disclosure experience. They shared their experiences of the group and the project's benefits, but also the losses they have faced. Our paper aims to be as accessible as possible.

Best Practices for Communicating a Diagnosis of Dementia: Results of a Multi-Stakeholder Modified Delphi Consensus Process.

Many individuals with dementia and their families report not receiving a dementia diagnosis. Previously published standards for delivering a dementia diagnosis are now more than 10 years old and were developed without patient and caregiver input. The objective of this study was to identify best practices for delivering a diagnosis of dementia using existing literature, involvement of diverse stakeholders, and consensus building through a formal modified Delphi approach. We convened a multi-stakeholder working group including a patient, caregivers, Alzheimer's Association staff, and clinicians from diverse backgrounds. The panel used the American Academy of Neurology process for recommendation development, consisting of a half-day workshop and 3 rounds of anonymous modified Delphi voting to achieve consensus. The working group convened from May 2022 through January 2023. The group chose to focus statements on a limited number of best practices that can be applied across clinic types. Seven best practice statements achieved consensus after a maximum of 3 rounds of voting. These included the following: (1) Clinicians must show compassion and empathy when delivering a diagnosis of dementia (level A). During dementia diagnosis disclosure, clinicians should (2) ask regarding diagnosis preferences, (3) instill realistic hope, (4) provide practical strategies, (5) provide education and connections to high-quality resources, (6) connect caregivers to support resources, and (7) provide written summaries of the diagnoses, plan, and relevant resources (each level B). Clinicians need to customize discussion of a dementia diagnosis for individual patients and their caregivers. These 7 best practices provide a diagnosis communication framework that can be implemented across varied clinical settings. Additional strategies, such as using optimal general communication approaches, are also important for dementia diagnosis discussions. Thoughtful application of these best practices is particularly important when caring for individuals from underrepresented communities. Further improving communication regarding dementia diagnoses will require health system changes (e.g., for sufficient time), improved access to specialty dementia care, and clinician training for delivering difficult diagnoses. More research is needed to identify culturally sensitive approaches to discussing dementia diagnoses.

Research protocol of the Laval-ROSA Transilab: a living lab on transitions for people living with dementia

BackgroundThe Laval-ROSA Transilab is a living lab that aims to support the Laval Integrated Health and Social Services Centres (Quebec, Canada) in consolidating the Quebec Alzheimer Plan. It aims to improve care transitions between different settings (Family Medicine Groups, home care, and community services) and as such improve the care of people living with dementia and their care partners. Four transition-oriented innovations are targeted. Two are already underway and will be co-evaluated: A) training of primary care professionals on dementia and interprofessional collaboration; B) early referral process to community services. Two will be co-developed and co-evaluated: C) developing a structured communication strategy around the dementia diagnosis disclosure; D) designation of a care navigator from the time of dementia diagnosis. The objectives are to: 1) co-develop a dashboard for monitoring transitions; 2) co-develop and 3) co-evaluate the four targeted innovations on transitions. In addition, we will 4) co-evaluate the impact and implementation process of the entire Laval-ROSA Transilab transformation, 5) support its sustainability, and 6) transfer it to other health organizations.MethodsMulti-methods living lab approach based on the principles of a learning health system. Living labs are open innovation systems that integrate research co-creation and knowledge exchange in real-life settings. Learning health systems centers care improvement on developing the organization's capacity to learn from their practices. We will conduct two learning cycles (data to knowledge, knowledge to practice, and practice to data) and involve various partners. We will use multiple data sources, including health administrative databases, electronic health records data, surveys, semi-structured interviews, focus groups, and observations.DiscussionThrough its structuring actions, the Laval-ROSA Transilab will benefit people living with dementia, their care partners, and healthcare professionals. Its strategies will support sustainability and will thus allow for improvements throughout the care continuum so that people can receive the right services, at the right time, in the right place, and from the right staff.

Diagnostic disclosure of Alzheimer's disease in Brazil: a national survey of specialized physicians.

The diagnosis of Alzheimer's disease (AD) can bring financial and emotional consequences to patients and caregivers. Whether or not the diagnosis should be disclosed to patients is a matter of debate amongst physicians and can be influenced by culture and experience. To investigate the current practice of physicians who attend and treat patients with dementia in Brazil regarding the disclosure of dementia diagnosis and compare the practice with what has been performed 15 years ago in the country. Data were evaluated using an electronic questionnaire. The questions used to carry out this research were similar to the questions of the study carried out 15 years ago 9. The form was sent to the Brazilian Academy of Neurology, the Brazilian Association of Geriatrics and Gerontology, and the Brazilian Association of Psychiatry, which forwarded it to their members. Analyses were conducted through non-parametric statistical tests, with a post-hoc assessment. 397 physicians responded to the survey, of which 231 are neurologists, 124 geriatricians, 29 psychiatrists and 13 from other specialties. The mean age was 45.2 years. The majority (66.7%) of the physicians reveal the diagnosis of AD always or usually. The youngest group of neurologists were more likely to disclose the diagnosis than the oldest group with a significant difference between them. In comparison to the 2008 Brazilian study, the percentage of physicians who always or usually disclose the diagnosis has risen by 22%. On the other hand, 12.3% of the physicians rarely or never disclose the diagnosis, in comparison to 25,3% in 2008. The main reasons for not disclosing the diagnosis concern the patients' mental health. Advances in dementia knowledge and biomarkers availability probably explain the increase in the rate of disclosure. The main challenge is to reconcile the autonomy of affected individuals, mental health issues after the diagnosis and the family member's opinion.

The experiences of family caregivers in response to a dementia diagnosis disclosure

BackgroundDementia is a serious disease that can lead to disability because it impacts the individual’s memory, cognition, behavior, and capacity to perform activities of daily living. While most people prefer to receive a full diagnostic disclosure, the actual care requirements of family caregivers of persons with dementia are often unknown after a dementia diagnosis is disclosed. The primary aim of this study was to explore the experiences of family caregivers in response to a dementia diagnosis disclosure and analyze the care needs of caregivers.MethodsA qualitative study conducted in accordance with COREQ guidelines. The grounded theory approach was undertaken in 20 family caregivers of persons with dementia, who were selected using purposive sampling. Data were analysed using the constant comparative method.ResultsThe core category of this study was "diagnostic disclosure: Start the long road of care challenges", which was defined as describing the experiences of family caregivers of persons with dementia after first being informed of diagnosis. Five major categories describing the experiences of family caregivers following a dementia diagnosis was developed: ‘deciding to seek medical attention,’ ‘the moment of disclosure,’ ‘conveying information,’ ‘maintaining the persons’ functioning,’ and ‘receiving support and living well with dementia.’ Subcategories within each major category also emerged.ConclusionsClear diagnostic disclosure is important for ensuring that positive developments can occur in response to disclosure. Healthcare professionals must develop strategies to prevent disclosure from triggering overreactive emotions from persons with cognitive impairments, assist them in understanding their illness in a tactful manner, and ensure that they understand how to cooperate in any subsequent care plans.

Clinician approaches to communicating a dementia diagnosis: An interview study.

BackgroundIndividuals with cognitive impairment and their families place a high value on receiving a dementia diagnosis, but clinician approaches vary. There is a need for research investigating experiences of giving and receiving dementia diagnoses. The current study aimed to investigate clinician approaches to giving dementia diagnoses as part of a larger study investigating patient, caregiver, and clinician experiences during the diagnosis encounter.MethodInvestigators conducted telephone interviews with Florida-based clinicians who give dementia diagnoses either rarely or commonly. Interviews employed a semi-structured interview guide querying communication practices used by clinicians when giving dementia diagnoses and how clinicians learned to give dementia diagnoses. Investigators used a descriptive qualitative design to conduct a thematic analysis of data.ResultsFifteen Florida-based clinicians participated, representing diverse backgrounds related to gender, race/ethnicity, specialty, and practice setting. Participants reported using patient- and family-centered communication practices including checking patient understanding, communicating empathically, and involving family members. Some clinicians explicitly asked patients and/or family members about their preferences regarding diagnosis disclosure; many clinicians tailored their disclosure based on patient and family characteristics or reactions. Some clinicians reported using specific diagnoses, while others used general terms such as “memory disorder.” Clinicians reported positively framing information, including instilling hope, focusing on healthy behaviors, and discussing symptom management. Finally, clinicians provided patient/family education and arranged follow up. Clinicians reported learning approaches to dementia diagnosis disclosure through formal training and self-education.ConclusionsDiverse Florida-based clinicians described dementia disclosure practices largely consistent with published guidance, but clinicians varied on approaches relating to soliciting patient disclosure preferences and terminology used. Clinicians caring for diverse populations described that cultural background affects the disclosure process, but more research is needed regarding this finding and best practices for individuals from different backgrounds.

SPIKES-D: a proposal to adapt the SPIKES protocol to deliver the diagnosis of dementia.

ABSTRACT.Dementia is a life-threatening and stigmatizing condition, with devastating impacts on the patient's personal identity and caregivers. There are many barriers to an effective diagnosis disclosure of dementia, including fear of causing distress, uncertainty of diagnosis, caregivers’ objection and lack of training in communication skills in undergraduate medical schools. Although some studies have been published on how to help physicians deliver an Alzheimer's disease diagnosis, no specific protocol has been published yet. The SPIKES protocol is a didactic approach designed to deliver bad news related to cancer, but it has been used globally and in a variety of clinical settings, including the teaching of communication skills to medical students and residents. It is known, however, that the cognitive impairment of Alzheimer's disease and other dementias may limit the understanding of the diagnosis’ complexity; hence, a few adaptations of this model were made after reviewing the current literature on dementia diagnosis disclosure. The suggested SPIKES-D protocol seems to encompass current guidelines about the communication of the diagnosis of dementia, keeping its didactic approach on breaking bad news and helping fulfill the gaps in this topic.

Smoking and Alcohol Consumption Following a New Dementia Diagnosis.

Despite extensive research on lifestyle factors that influence the risk of developing dementia, limited evidence exists on whether older adults adopt healthier habits post-diagnosis in the hope of preserving their quality of life. Using panel data (1998-2014) from the Health and Retirement Study, this study investigated whether individuals who received a new dementia diagnosis were more likely to modify smoking and drinking behaviors than those without such a diagnosis. Propensity score weighting was used to adjust for observable differences between groups. Older adults with a new dementia diagnosis were 2.8 times more likely to reduce alcohol consumption than those without such a diagnosis. This result was mainly attributable to "light" drinkers at baseline and appeared to fade over time. We found no statistically significant effect of a dementia diagnosis on smoking cessation or on reduction in the number of cigarettes smoked. These results were robust to multiple sensitivity tests, including the use of cognition scores to indicate dementia onset instead of self-reported physician diagnosis. A new dementia diagnosis can serve as a window of opportunity that prompts some older adults to change habits related to alcohol consumption. This has important implications for clinical practice surrounding dementia diagnosis disclosure, the rates of which are currently much lower than other medical conditions.

Discourse Features Among Providers, Patients, and Companions and Their Effect on Outcomes of Dementia Diagnosis Disclosure.

Receiving a diagnosis of dementia has major implications. Although protocols for disclosing difficult information have been developed for other health conditions, no such evidence-based method exists for dementia. As a step toward that goal, this study analyzed the discourse within dementia diagnosis disclosure sessions to identify conversational features associated with psychological outcomes. The Roter Interaction Analysis System (RIAS) was used to code the discourse among patients, their companions, and providers during 84 dementia diagnosis disclosure sessions following an initial evaluation at an Alzheimer's Disease Research Center. Providers dominated the conversation in terms of overall time spent talking. With more severe dementia, patients spoke less and companions spoke more. Provider-positive rapport building was associated with lower patient depression and anxiety following the disclosure session. Patient-positive rapport building was associated with higher companion anxiety, but only when the patient was not suspected to have dementia. No associations were found between other types of discourse and patient or companion psychological outcomes. A relatively small amount of positive rapport building by providers can lead to reduced distress following dementia disclosure. Dementia disclosure best practices should emphasize patient-centered communication techniques in order to minimize psychological distress following diagnosis.

A Study on Experiences of Elderly Women with Early-Stage Dementia Using Day Care Services

본 연구에서는 질적 연구방법을 통해 주간보호센터를 이용하는 여성 초기 치매노인 6명의 경험을 탐색하였다. 개인의 특성과 환경적 맥락의 상호작용을 중요시하는 심리사회적 접근방식을 기반 으로 초기 치매노인에게 적절한 조사방법을 활용하여 심층면접을 수행하였다. 그 결과 ‘기억의 편집’, ‘현재 나의 삶’, ‘나에게 일어난 변화’, ‘주변사람들’ 등 4가지 범주에서 12개의 주제묶음이 도출되었다. 주제묶음들은 치매와 관련하여 일상생활 및 자신에게 초래된 변화나 문제의 악화와 관련된 부정적 요소들(고착-평생에 한이 된 기억들, 상실과 좌절, 의존과 무력감, 고립과 단절 및관계의 악화, 부정과 의구심, 상대하기 싫은 사람들)과 더불어 변화에 대한 대처와 적응(회귀-내가 주인공이었던 시절, 수용과 유지, 독립과 대처, 규칙적 일과와 배우는 기쁨, 숨겨진 성격과 마음속 말들의 표출, 좋은 사람들과 지내기)이라는 두 가지 차원에서 파악되었다. 연구를 통해 초기 치매노 인의 경험의 다양성과 소통의 욕구를 확인하였으며, 초기 치매노인에 대한 사회복지 개입에 있어 개인의 생애에 나타난 기억의 고착이나 회귀의 의미 파악, 적응과 대처방식에 기반한 개입, 치매 진단의 공개 여부에 대한 고려, 초기 치매인에 특화된 주간보호프로그램의 필요성, 초기치매에 대한 효과적 대응과 부정적 고정관념의 극복 필요성을 제시하였다.The study aims to explore the experiences of elderly women with early-stage dementia using daycare center services on daily bases. Qualitative research was conducted by adopting research methods appropriate to persons with dementia based on the psycho-social approach to dementia which focused on interactions between persons and social environments. 4 categories(‘edition of memories’, ‘present life’, ‘changes of my life’, and ‘surrounding people’) and 12 themes were derived from the data of in-depth interviews with the 6 participants. The meanings of the experiences were analyzed by divided two dimensions, aggravating elements(fixed memories, loss and frustration, dependence and impotence, isolation and bad relationships, denial and suspicion, unpleasant people) and improving elements(regressed memories, acceptance and maintenance, independence and coping, routines and joy of learning, expression of hidden feelings, favorite people) of the challenges from dementia. The participants expressed needs for communication with people and diverse experiences related early-stage dementia. Several suggestions were made from the results of the study: paying attention to the repeated memories of the whole lives, implementing interventions based on individual adaptation and coping strategies, considering disclosure of dementia diagnosis, developing day care programs specialized for people with early-stage dementia, and overcoming negative stereotypes of dementia.

Do Patients Want to Listen to a Diagnosis of Dementia in Korea? Preferences on Disclosing a Diagnosis of Dementia and Discussing Advance Care Planning in Elderly Patients with Memory Concerns and Their Families.

ObjectiveIn this study, we aimed to investigate preferences regarding the disclosure of a dementia diagnosis and advance care planning (ACP) in patients with memory complaints and their families.MethodsA total of 98 patients who visited the department of psychiatry at a tertiary hospital with memory complaints and 62 family members completed a structured questionnaire. The questionnaire included preferences on disclosure of dementia and cancer diagnosis, awareness and preferences on ACP.ResultsIn total, 96.9% of patients were willing to know their dementia diagnosis. There were no significant differences in preferences between the diagnosis of cancer and dementia. Only 24.7% of patients and 45.8% of family members have heard of ACP. However, 82.8% of patients agreed on the necessity of ACP under the current condition. Multivariate analysis revealed that younger patients were more likely to agree with necessity for ACP under the current condition.ConclusionIn Korea, patients with memory complaints and their family members strongly favored a disclosure of dementia diagnosis. The majority of participants also agreed on the necessity of ACP. More active involvement of patients is needed in treatment decisions and care planning in cases of dementia as well as other life-threatening illnesses.

Persistent and delayed effects of a psycho-educational program for family caregivers at disclosure of dementia diagnosis in a relative: a six-month follow-up study

Abstract Background: Disclosure of a relative’s dementia diagnosis marks the family member’s official entry into the caregiver role, yet caregivers seldom receive support at this early stage in order to facilitate transition. This study (2008–2011) sought to evaluate whether positive effects observed at completion of a psycho-educational program persisted and whether any delayed effects emerged six months later. Methods: French-speaking primary caregivers of relatives diagnosed with dementia in the past nine months were recruited at memory clinics in Quebec (Canada). The 97 participants were blindly assessed using standardized measures before randomization to the experimental or the control group and were evaluated at program completion and six months later on outcomes associated with a healthy role transition. Results: Compared with controls, caregivers in the experimental group at both time points were better able to plan for the future care needs of their relative (p=0.05), made greater use of the coping strategy of reframing (p=0.05), experienced less psychological distress (p=0.05), had better knowledge of available services (those with low and moderate knowledge at baseline (p=0.001 and p=0.01, respectively) and tended to be more efficacious in their caregiver role (p=0.06). No persistent effect regarding preparedness or confidence in dealing with caregiving was observed, and no delayed effect was observed for stress-management coping strategies or informal support family conflicts. Conclusions: Intervention at career onset is key to fostering a healthy caregiver role transition. Greater emphasis should be placed on developing skills concerning non-significant outcomes. This trial was not registered.

Linguistic features of power dynamics in triadic dementia diagnostic conversations

ObjectiveThe purpose of this study was to examine linguistic expressions of power during dementia diagnosis disclosure. MethodsVideotapes of dementia diagnosis disclosure sessions were reviewed to examine linguistic features of 86 physician–patient–companion triads. Verbal dominance and pronoun use were measured as indications of power. ResultsPhysicians dominated the conversation, speaking 83% of the total time. Patients spoke more than companions (10% versus 6%). Dementia status was only related to the amount of time companions spent talking. Physicians used fewer first person singular and more first person plural pronouns than patients and companions. Power indices did not predict anxiety, depression, or satisfaction with the medical visit. ConclusionDuring the disclosure of a dementia diagnosis, physicians tend to dominate the conversation, exerting their social status through a variety of linguistic features. Patients and companions are not more distressed or dissatisfied as a result and exert their own subtle attempts to assert their role in the conversation. Practice implicationsRecognition of a hierarchical structure within healthcare interactions may be the first step toward maximizing patient outcomes. Evaluating patient expectations and preferences regarding physician communication style may be the most effective way of promoting patient-centered healthcare communication.

How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care?

Objectives:To examine the experiences of spousal care givers of Alzheimer patients to disclosure of dementia diagnosis and subsequent care.Methods:A random sample of 1943 spousal care givers of people receiving medication...

P1-428: Dementia diagnosis disclosure: Results of patient and caregiver perspectives

P1-428: Dementia diagnosis disclosure: Results of patient and caregiver perspectives

A Continuing Medical Education Initiative for Canadian Primary Care Physicians: The Driving and Dementia Toolkit: A Pre‐ and Postevaluation of Knowledge, Confidence Gained, and Satisfaction

This study examined the effect of the Driving and Dementia Toolkit on physician knowledge and confidence gained and the anticipated change in patient assessment and evaluated the extent to which physicians found the material to be useful. Before receiving the driving toolkit, 301 randomly selected primary care physicians received a copy of the pretest questionnaire; 145 responded and met the eligibility criteria. This group was then sent the toolkit, a satisfaction a survey, and a posttest questionnaire. Physicians were faxed the questionnaires (with up to three reminders) and telephoned if necessary. Changes in pre- and posttest results were analyzed using the McNemar test and Wilcoxon signed rank test nonparametric procedures included in SPSS, Version 10.0, and paired-samples t test. Pre- and posttest data were available and could be matched for 86 physicians (59.3%) response. Knowledge and confidence increased significantly (P</=.05) for most of the toolkit content questions. There was also a clear intent on the part of study participants to begin including additional pertinent questions in the patient/caregivers interview when assessing a patient's fitness to drive. On a scale from 1 (low) to 10 (high), overall satisfaction with the toolkit rated an average of 8.4. Use of the toolkit resulted in a clear improvement in physicians' reported knowledge of and confidence in dealing with dementia and driving. Future applications of similar innovative continuing education models can be used for other areas such as disclosure of dementia diagnosis, capacity assessments, or end-of life issues.

The psychological consequences of learning a diagnosis of dementia: Three case examples

The question of disclosure of dementia diagnosis has become of greater significance in recent years, probably in part due to people presenting at earlier stages of the disorder and the necessity for patients to be able to consent to drug treatments for Alzheimer's disease and greater public awareness of the condition. This paper describes the effects on three people of learning their diagnosis, and a psychological intervention used with them. The methodological problems of research in this area are discussed, and the related question of what types of intervention may be useful to maintain self-esteem, social functioning and cognitive abilities following diagnosis.