No full-text available
To read the full-text of this research,
you can request a copy directly from the authors.
Disclosing a diagnosis of dementia: A systematic review
Abstract
The issue of diagnostic disclosure in dementia has been debated extensively in professional journals, but empirical data concerning disclosure in dementia has not previously been systematically reviewed.
To review empirical data regarding diagnostic disclosure in dementia.
Five electronic databases were searched up to September 2003 (Medline, Embase, Cinahl, Sociological Abstracts, Web of Science). Additional references were identified through hand searches of selected journals and bibliographies of relevant articles and books. The title and abstract of each identified paper were reviewed independently by two reviewers against pre-determined inclusion criteria: original data about disclosure were presented and the paper was in English. Any disagreements were resolved by discussion until consensus was reached. Data were extracted independently by two reviewers using a structured abstraction form. Data quality were not formally assessed although each study was critically reviewed in terms of methodology, sampling criteria, response rates and appropriateness of analysis.
Fifty-nine papers met the inclusion criteria for detailed review. Many of the studies had methodological shortcomings. The studies reported wide variability in all areas of beliefs and attitudes to diagnostic disclosure and reported practice. Studies of the impact of disclosure indicate both negative and positive consequences of diagnostic disclosure for people with dementia and their carers.
Existing evidence regarding diagnostic disclosure in dementia is both inconsistent and limited with the perspectives of people with dementia being largely neglected. This state of knowledge seems at variance with current guidance about disclosure.
... Prior research suggests numerous barriers for communicating a dementia diagnosis (Table 1) which includes clinician, patient/ family, and system-level factors. 6,8,11,[13][14][15][16][17][18][19] Improving the communication of a dementia diagnosis in a timely manner is also recognized as one goal of the U.S. National Plan to Address Alzheimer's Disease. 8 However, consensus-based recommendations for clinicians' disclosure of a dementia diagnosis are now more than 10 years old. ...
... Finally, clinicians mentioned that lack of time also creates challenges associated with communicating uncertainty or educating patients who misunderstand the diagnosis. As 1 clinician said, "When we have more time, it's more time to sit with the patients, the families . . . the more time we have to facilitate the conversation, the better" (15). ...
... This involved family members not wanting the clinician to disclose the diagnosis to the patient: "We always get these family members that call up and say they don't want you to mention Alzheimer's. I don't see any value of not mentioning it, so I always mention it" (15). Another clinician had similar experiences: "When we talk about the diagnosis, [the family] will say to me, 'please don't tell my loved one they have Alzheimer's disease.' ...
The vast majority of individuals with dementia want to receive a diagnosis. Research suggests, however, that only a fraction of individuals with dementia receive a diagnosis and patients and families often feel the information is poorly explained. We thus aimed to assess clinician-reported barriers to dementia disclosure and recommendations for giving a dementia diagnosis. To accomplish this, we performed telephone interviews with 15 clinicians from different specialties using a semi-structured interview guide. Transcripts were analyzed thematically. Clinician-reported barriers fit 3 categories: patient and caregiver-related barriers, clinician-related barriers, and barriers related to the triadic interaction. Patient and caregiver-related barriers included lack of social support, misunderstanding the diagnosis, and denial. Clinician barriers included difficulty giving bad news, difficulty communicating uncertainty, and lack of time. Triadic interaction barriers included c hallenges meeting multiple goals or needs and family requests for non-disclosure. Recommendations for best practice included for clinicians to foster relationships, educate patients and family, and take a family-centered approach. Clinicians described recommendations for fostering relationships such as using empathic communication and developing and maintaining connection. Educating patients and families included tailoring communication, explaining how the diagnosis was reached, and following up. Family approaches included meeting with family members prior to delivering the diagnosis and involving the caregiver in the discussion. Findings may inform updated recommendations for best practices when communicating a dementia diagnosis.
... Additional reasons for clinician reluctance to make or disclose dementia diagnoses have been identified and may include clinicians not wanting to give a diagnosis that isn't definite [12], perceived lack of benefit of an early diagnosis [21,23], concerns regarding emotional distress associated with the diagnosis [23,24], the perception that the patient does not want to receive a diagnosis [12,23] or will be unable to understand the diagnosis [23,24], therapeutic nihilism [21][22][23][24], and concerns about dementia stigma [12,[21][22][23][24]. Clinicians may also believe that costs of delivering a diagnosis outweigh benefits [23,24], there is insufficient remuneration for provision of dementia care [22], or that diagnosis will strain medical systems [21,23]. ...
... Additional reasons for clinician reluctance to make or disclose dementia diagnoses have been identified and may include clinicians not wanting to give a diagnosis that isn't definite [12], perceived lack of benefit of an early diagnosis [21,23], concerns regarding emotional distress associated with the diagnosis [23,24], the perception that the patient does not want to receive a diagnosis [12,23] or will be unable to understand the diagnosis [23,24], therapeutic nihilism [21][22][23][24], and concerns about dementia stigma [12,[21][22][23][24]. Clinicians may also believe that costs of delivering a diagnosis outweigh benefits [23,24], there is insufficient remuneration for provision of dementia care [22], or that diagnosis will strain medical systems [21,23]. ...
... Additional reasons for clinician reluctance to make or disclose dementia diagnoses have been identified and may include clinicians not wanting to give a diagnosis that isn't definite [12], perceived lack of benefit of an early diagnosis [21,23], concerns regarding emotional distress associated with the diagnosis [23,24], the perception that the patient does not want to receive a diagnosis [12,23] or will be unable to understand the diagnosis [23,24], therapeutic nihilism [21][22][23][24], and concerns about dementia stigma [12,[21][22][23][24]. Clinicians may also believe that costs of delivering a diagnosis outweigh benefits [23,24], there is insufficient remuneration for provision of dementia care [22], or that diagnosis will strain medical systems [21,23]. ...
Background
Individuals 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.
Method
Investigators 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.
Results
Fifteen 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.
Conclusions
Diverse 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.
... For example, many individuals reported that receiving a diagnostic label produced feelings of relief, validation, legitimisation, and empowerment (31, 46, 57, 60, 66, 72, 77, 79, 80, 83, 84, 86-89, 91, 92, 96, 97, 99, 105-109, 111, 113, 120, 121, 126, 133, 134, 136, 139). Other studies reported individuals described diagnostic labels as providing hope and removing uncertainty (93,95,96,112,121,130,134,136,137), facilitating communication with others (98,130), and increasing self-understanding (97,131,138). ...
... Healthcare professional interactions were reported to occur along a spectrum from individuals feeling adequately supported and reassured (31,46,51,59,60,87,93,95,96,131) through to individuals feeling dismissed and not listened to (31, 59, 61, 72, 78, 80, 84-86, 89, 91, 93, 95, 97, 98, 104-107, 120). Perception of interactions with healthcare professionals often reflected the individual's understanding of the healthcare professionals': role [e.g., responsible for correcting the diagnosis, open discussion between professional and individual (47,109)]; the perceived level of skill, knowledge and competency (95,97); and communication skills (47,91,112). ...
... Beneficial behaviour modifications included greater ownership of health (51,82,109,136) and positive changes to physical activity practises, dietary choices, self-awareness, and risk management (48, 50, 51, 55-57, 59, 62, 67, 81-83, 87, 88, 104, 105, 107, 109, 113, 136, 138). While detrimental behaviour modifications were reported as activity restriction (46,51,66,88,105,107,112,133), reduction in employment and educational opportunities (63,81,107,133,138), and withdrawal from social interactions and relationships (51,61,66,74,75,81,95,96,105). Other individuals indicated increased hypervigilance (51,57,75,112) and additional disruptive and risk-taking behaviours (50,57,70,82,98) and suicide attempts (70,107,138). ...
Objectives: To develop a thematic framework for the range of consequences arising from a diagnostic label from an individual, family/caregiver, healthcare professional, and community perspective.
Design: Systematic scoping review of qualitative studies.
Search Strategy: We searched PubMed, Embase, PsycINFO, Cochrane, and CINAHL for primary studies and syntheses of primary studies that explore the consequences of labelling non-cancer diagnoses. Reference lists of included studies were screened, and forward citation searches undertaken.
Study Selection: We included peer reviewed publications describing the perceived consequences for individuals labelled with a non-cancer diagnostic label from four perspectives: that of the individual, their family/caregiver, healthcare professional and/or community members. We excluded studies using hypothetical scenarios.
Data Extraction and Synthesis: Data extraction used a three-staged process: one third was used to develop a preliminary framework, the next third for framework validation, and the final third coded if thematic saturation was not achieved. Author themes and supporting quotes were extracted, and analysed from the perspective of individual, family/caregiver, healthcare professional, or community member.
Results: After deduplication, searches identified 7,379 unique articles. Following screening, 146 articles, consisting of 128 primary studies and 18 reviews, were included. The developed framework consisted of five overarching themes relevant to the four perspectives: psychosocial impact (e.g., positive/negative psychological impact, social- and self-identity, stigma), support (e.g., increased, decreased, relationship changes, professional interactions), future planning (e.g., action and uncertainty), behaviour (e.g., beneficial or detrimental modifications), and treatment expectations (e.g., positive/negative experiences). Perspectives of individuals were most frequently reported.
Conclusions: This review developed and validated a framework of five domains of consequences following diagnostic labelling. Further research is required to test the external validity and acceptability of the framework for individuals and their family/caregiver, healthcare professionals, and community.
... 3 The progression of healthy aging to dementia must be considered a continuum, both in terms of the slow manifestation of the impairment of cognitive functions, as well as functional limitation. 4 Originally, mild cognitive impairment (MCI) was considered a condition in which someone has minor cognitive decline, not severe enough to interfere significantly with daily life and Dement Neuropsychol 2020 December; 14(4):333-339 ...
... The disclosure of AD poses a great challenge because it involves emotionally charged communication of a stigmatized condition, which is currently one of the most feared diseases. 4,5 In the last decade, a Brazilian survey revealed that less than 50% of geriatricians, neurologists and psychiatrists would regularly inform patients of the diagnosis of AD, in agreement with other studies. [4][5][6] There are many barriers to an effective disclosure of diagnosis of dementia to patients, including fear of withdrawing hope and eliciting distress and other negative reactions, uncertainty of diagnosis, caregivers' objection and lack of training on communication skills in medical schools. ...
... 4,5 In the last decade, a Brazilian survey revealed that less than 50% of geriatricians, neurologists and psychiatrists would regularly inform patients of the diagnosis of AD, in agreement with other studies. [4][5][6] There are many barriers to an effective disclosure of diagnosis of dementia to patients, including fear of withdrawing hope and eliciting distress and other negative reactions, uncertainty of diagnosis, caregivers' objection and lack of training on communication skills in medical schools. Physicians also argue that the patients' cognitive decline may limit the understanding of the diagnosis and finally that there is the patient's right "not to know". ...
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.
... 10 Knowing the diagnosis may have psychological benefits to patients with dementia because it may help them understand and cope with their memory problems and other symptoms. 10,11 Some dementia patients and caregivers feel relieved once an explanation for symptoms is provided and a treatment plan is in place. 12 When patients with dementia know about their condition, they have the opportunity to seek appropriate medical care and support services, maximize benefits of available treatments, and participate in decisions about their care. ...
... 12 When patients with dementia know about their condition, they have the opportunity to seek appropriate medical care and support services, maximize benefits of available treatments, and participate in decisions about their care. 10,11,13 Even though dementia may influence oneʼs ability to remember a diagnosis, knowing oneʼs dementia status in the early stages of disease also allows patients to play an active role in making legal and financial plans. 10,11 Moreover, many observers argue people have a right to know and understand their diagnosis, including dementia, because patient autonomy is an important principle of medical ethics. ...
... 10,11,13 Even though dementia may influence oneʼs ability to remember a diagnosis, knowing oneʼs dementia status in the early stages of disease also allows patients to play an active role in making legal and financial plans. 10,11 Moreover, many observers argue people have a right to know and understand their diagnosis, including dementia, because patient autonomy is an important principle of medical ethics. 14 Respecting patient autonomy and shared decision making have been shown to improve quality of care, treatment adherence, and patient outcomes. ...
OBJECTIVES
To examine racial and ethnic differences in knowledge about oneʼs dementia status.
DESIGN
Prospective cohort study.
SETTING
The 2000 to 2014 Health and Retirement Study.
PARTICIPANTS
Our sample included 8,686 person‐wave observations representing 4,065 unique survey participants, aged 70 years or older, with dementia, as identified by a well‐validated statistical prediction model based on individual demographic and clinical characteristics.
MEASUREMENTS
Primary outcome measure was knowledge of oneʼs dementia status, as reported in the survey. Patient characteristics included race/ethnicity, age, sex, survey year, cognition, function, comorbidity, and whether living in a nursing home.
RESULTS
Among subjects identified as having dementia by the prediction model, 43.5% to 50.2%, depending on the survey year, reported that they were informed of the dementia status by their physician. This proportion was lower among Hispanics (25.9%‐42.2%) and non‐Hispanic blacks (31.4%‐50.5%) than among non‐Hispanic whites (47.7%‐52.9%). Our fully adjusted regression model indicated lower dementia awareness among non‐Hispanic blacks (odds ratio [OR] = 0.74; 95% confidence interval [CI] = 0.58‐0.94) and Hispanics (OR = 0.60; 95% CI = 0.43‐0.85), compared to non‐Hispanic whites. Having more instrumental activity of daily living limitations (OR = 1.65; 95% CI = 1.56‐1.75) and living in a nursing home (OR = 2.78; 95% CI = 2.32‐3.32) were associated with increased odds of subjects reporting being told about dementia by a physician.
CONCLUSION
Less than half of individuals with dementia reported being told by a physician about the condition. A higher proportion of non‐Hispanic blacks and Hispanics with dementia may be unaware of their condition, despite higher dementia prevalence in these groups, compared to non‐Hispanic whites. Dementia outreach programs should target diverse communities with disproportionately high disease prevalence and low awareness.
... Responses to multiple survey questions suggest that patient stakeholders want a diagnosis, even if the diagnosis is incorrect (ie, "false positive"), whereas clinicians are more concerned about the detrimental effects of delivering an incorrect diagnosis. Physician reluctance to make or disclose dementia diagnoses relates to low confidence in one's ability to diagnose dementia, 29,30 not wanting to give a diagnosis that is not definite, 30 perceived lack of benefit of early diagnoses, 29,31 concerns regarding emotional distress, 31,32 the perception that the patient does not want the diagnosis, 30,31 belief that costs outweigh benefits, 31,32 concerns that the patient will be unable to understand the diagnosis, 31,32 therapeutic nihilism, 29,31,32 concerns about dementia stigma, [29][30][31][32] lack of training, 29 limited access to specialists or support services, 31 and belief that diagnosis will strain medical systems. 29,31 Ethicists also note potential negative effects of both correct (stigma, despair, implications for family members) and incorrect (inappropriate treatment, cost) dementia diagnoses. ...
... Responses to multiple survey questions suggest that patient stakeholders want a diagnosis, even if the diagnosis is incorrect (ie, "false positive"), whereas clinicians are more concerned about the detrimental effects of delivering an incorrect diagnosis. Physician reluctance to make or disclose dementia diagnoses relates to low confidence in one's ability to diagnose dementia, 29,30 not wanting to give a diagnosis that is not definite, 30 perceived lack of benefit of early diagnoses, 29,31 concerns regarding emotional distress, 31,32 the perception that the patient does not want the diagnosis, 30,31 belief that costs outweigh benefits, 31,32 concerns that the patient will be unable to understand the diagnosis, 31,32 therapeutic nihilism, 29,31,32 concerns about dementia stigma, [29][30][31][32] lack of training, 29 limited access to specialists or support services, 31 and belief that diagnosis will strain medical systems. 29,31 Ethicists also note potential negative effects of both correct (stigma, despair, implications for family members) and incorrect (inappropriate treatment, cost) dementia diagnoses. ...
... Responses to multiple survey questions suggest that patient stakeholders want a diagnosis, even if the diagnosis is incorrect (ie, "false positive"), whereas clinicians are more concerned about the detrimental effects of delivering an incorrect diagnosis. Physician reluctance to make or disclose dementia diagnoses relates to low confidence in one's ability to diagnose dementia, 29,30 not wanting to give a diagnosis that is not definite, 30 perceived lack of benefit of early diagnoses, 29,31 concerns regarding emotional distress, 31,32 the perception that the patient does not want the diagnosis, 30,31 belief that costs outweigh benefits, 31,32 concerns that the patient will be unable to understand the diagnosis, 31,32 therapeutic nihilism, 29,31,32 concerns about dementia stigma, [29][30][31][32] lack of training, 29 limited access to specialists or support services, 31 and belief that diagnosis will strain medical systems. 29,31 Ethicists also note potential negative effects of both correct (stigma, despair, implications for family members) and incorrect (inappropriate treatment, cost) dementia diagnoses. ...
BACKGROUND:
Patient and caregiver perspectives on amyloid positron emission tomography (PET) use are largely unexplored, particularly as compared with clinician views.
METHODS:
We surveyed clinicians, patients, caregivers, and dementia advocates on topics relating to an evidence-based guideline on amyloid PET use. Topic importance was rated on a 9-point scale. Patient stakeholder and clinician views were compared using the Mann-Whitney U test.
RESULTS:
Patient representatives (n=107) rated all survey topics as equal to or more important than clinicians (n=114) except 1 item discussing potential harms of false-positive diagnoses. Differences between patient representative and clinician populations were greatest when comparing the competing values of false-positive and false-negative diagnoses and the value of testing asymptomatic individuals.
CONCLUSIONS:
Patients and caregivers emphasized the importance of having a dementia diagnosis and placed more value on testing and outcomes for asymptomatic populations than clinicians. This underscores the importance of research investigating the effect of amyloid PET results on asymptomatic individuals and the need for amyloid PET ordering and disclosure standards.
10.1097/WAD.0000000000000311
... Receiving a diagnosis of ADRD may have a profound impact on the person's life. Studies have demonstrated that receiving an ADRD diagnosis improves psychologi-cal and behavioral aspects of people with ADRD and their family members when it results in psychological relief [4][5][6][7][8][9][10] or promotion of healthy behaviors [11]. Some studies, however, have also provided evidence of the negative ramifications of a diagnosis in that it may cause negative consequences such as fear and anxiety [3,4,7,9,12], posttraumatic stress [13], and suicidal ideation [14,15]. ...
... Studies have demonstrated that receiving an ADRD diagnosis improves psychologi-cal and behavioral aspects of people with ADRD and their family members when it results in psychological relief [4][5][6][7][8][9][10] or promotion of healthy behaviors [11]. Some studies, however, have also provided evidence of the negative ramifications of a diagnosis in that it may cause negative consequences such as fear and anxiety [3,4,7,9,12], posttraumatic stress [13], and suicidal ideation [14,15]. Given the nuanced impact a diagnosis has on individual psychosocial functioning, healthcare providers need to recognize and weigh the relative dis/advantages of receiving a diagnosis of ADRD. ...
Introduction:
Although early diagnosis has been recognized as a key strategy to improve outcomes of Alzheimer's disease and related dementias (ADRD), the effect of receiving a diagnosis on patients' well-being is not well understood. This study addresses this gap by examining if receiving a dementia diagnosis influences social relationships.
Methods:
Data from the 3 waves (2012, 2014, and 2016) of the Health and Retirement Study were utilized as part of this study. This study examined whether receiving a new diagnosis of ADRD changed subsequent social relationships (social networks, social engagement, and social support). Regression analyses with inverse probability weighting were performed to estimate the impact of receiving a dementia diagnosis on changes in social relationships.
Results:
Receiving a new diagnosis of ADRD reduced both informal and formal social engagement. We found no statistically significant impacts of receiving a diagnosis of ADRD on social networks and social support.
Conclusions:
Results suggest that receiving a new diagnosis of ADRD may have unintended impacts on social relationships. Practitioners and policymakers should be aware of these consequences and should identify strategies to alleviate the negative impact of receiving a diagnosis of ADRD and methods to mobilize support networks after receiving a diagnosis.
... Knowing the diagnosis will aid in positive adaptations within the family and also increases spouse relationships. It also facilitates access to early treatment (Robinson et al., 2011 andBamford et al., 2004). However the reasons for not disclosing the diagnosis included "emotional upset, earlier distressing experience, rejection, stigma and embarrassment, no effective medical care available, may cause suicide tendencies in patients. ...
... It is also found that diagnosis resulted in a negative emotional impact such as hopelessness, fear, sorrow, despair, lack of insight and denial including defensiveness and anger (Aminzadeh et al 2006). It is found that disclosure of a dementia diagnosis will have an impact on a person's self-esteem, confidence and personhood (Bamford et al (2004). The disclosure may lead to maladaptive coping strategies including selfblame and externalization. ...
According to the estimates in the World Alzheimer Report 2015, there are 46.8 million people living with dementia worldwide in 2015. The number of older people living in higher income countries is projected to increase by just 56%, 138% in upper middle income countries, and 185% in lower middle income countries and by 239% in low income countries, during 2015-2050. Ensuring early diagnosis becomes a priority strategy which benefits the person with dementia and their caregiver. Despite the improvements, currently in England approximately two thirds of the people with dementia do not have a formal diagnosis. In contrast there are no clear strategies and priorities in developing and low income countries where the burden is quite high. Everybody has a "right to know" about the diagnosis, condition, information, and advice available to the people with dementia. There are associated risks and benefits of disclosing a diagnosis of dementia, both to the person with dementia and their carer. This paper aims to critically examine risks and benefits of disclosing the diagnosis of dementia. A relevant literature search was conducted to critically discuss the benefits and risks of disclosure of diagnosis. The present paper has categorised and critically discussed the benefits and risks of disclosure. The author concludes that the benefits of disclosure outweigh the risks of disclosure. Disclosure of diagnosis can improve the quality of life of people with dementia.
... ACP provides patients and their relatives with an opportunity to obtain more information about the disease, its likely course, expected problems and therapeutic options [31,32]. Currently, the diagnosis and stages of dementia are not always explained in a timely manner nor are they fully understood by the patients and their relatives [33,34]. In addition, dementia is not always acknowledged as a terminal disease even though it often limits the life span [35,36]. ...
... However, traditional advance directive forms do not allow this leeway to be conveyed. Most dementia-specific ACP interventions and tools are designed to specifically address the extent of flexibility that patients wish to authorise their surrogates or physicians with in decision making (see for instance ref. 34). ...
... The diagnostic disclosure in dementia has been debated extensively in professional journals, books, Media, etc. Bamford C., et al., (2004) tried to review empirical data regarding diagnostic disclosure in dementia. They found that the impact of disclosure indicates both negative and positive consequences of diagnostic disclosure for people with dementia and their carers. ...
... It is important to consider the points made by Bamford, C., et al., (2004) and this state of knowledge seems at variance with current guidance about disclosure. There is no doubt that the focus of attention should be the person with dementia care whether it is disclosure or not disclosure. ...
The present study sought complex, comprehensive understanding
and insight on challenges of care-giving to older adults by using
qualitative approach. Forty care-givers aged 23 and above living in
Nnewi, south-east Nigeria participated in the study. Focus Group
Discussion was used to collect data from the participants. The
collected data were analysed in themes and the results revealed that
family care-givers undergo stress, lack of finance, insufficient time
for themselves and negative attitudes of older adults towards them.
Social work professionals are required to teach family care-givers
essential social skills in providing care and support for older adults.
... ACP provides patients and their relatives with an opportunity to obtain more information about the disease, its likely course, expected problems and therapeutic options [31,32]. Currently, the diagnosis and stages of dementia are not always explained in a timely manner nor are they fully understood by the patients and their relatives [33,34]. In addition, dementia is not always acknowledged as a terminal disease even though it often limits the life span [35,36]. ...
... However, traditional advance directive forms do not allow this leeway to be conveyed. Most dementia-specific ACP interventions and tools are designed to specifically address the extent of flexibility that patients wish to authorise their surrogates or physicians with in decision making (see for instance ref. 34). ...
Advance directives emerged in the 1960s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and care. Advance care planning (ACP) has been suggested as a way to emphasise communication between the patient, their surrogate decision maker and healthcare professional(s) in order to anticipate healthcare decisions in the event that the patient loses decision-making capacity, either temporarily or permanently. In more and more countries, ACP has become common practice in planning the treatment of terminal diseases such as cancer or amyotrophic lateral sclerosis. However, even though neurodegenerative dementia results in the gradual loss of decision-making capacity, ACP is still extremely rare. There are several reasons for this. Firstly, some people have difficulties talking about illness and death, especially when this involves anticipation. Secondly, lay people and professionals alike struggle to consider Alzheimer’s disease and similar forms of dementia as terminal diseases. Thirdly, although patient decision-making capacity gradually decreases with the progression of dementia, the patient retains the ability to communicate and interact with surrogates and professionals until the later stages of the disease. Therefore, surrogates and professionals may feel unsure or even ambivalent when enforcing advance directives, in particular when those decisions may shorten a patient’s life expectancy. Finally, to be effective, existing ACP interventions should be adapted to patient’s cognitive impairments and lay out dementia-specific scenarios. Current WHO estimates indicate that by 2050 one out of four people will potentially have to take care of a relative with cognitive and communication impairments for several years. In Switzerland, the Federal Office of Public Health and the regional states have established national strategies on dementia and palliative care. These strategies emphasise the need for ACP as a means to prepare patients and their relatives for future decisions, as soon as someone is diagnosed with dementia. This moment is thus especially conducive to develop appropriate processes to prompt the elderly and people diagnosed with dementia to engage in ACP. Therefore, the aim of the present paper is to identify the benefits and challenges of ACP in dementia care, outline strategies to design appropriate procedures and tools, and provide professionals, patients and their relatives with opportunities to engage in ACP.
... The disclosure of the diagnosis must be done in a delicate fashion in order to convey the difficulties, provide realistic hope, and instil an improved ability to handle things effectively. The problem of telling the person who is affected by dementia that they have dementia is an even more delicate matter [36], which may even worsen the problem. There is a good chance that many members of the patient's family will ask the physician not to talk about the consequences of the treatment to the patient out of fear that it will make them feel worse and increase their likelihood of developing depression. ...
In the primary phases of Alzheimer's disease (AD) and vascular dementia, memory impairments and cognitive abnormalities are common. Because of the rising prevalence of dementia among the elderly, it is critical to promote healthy habits that can delay the onset of cognitive decline. Cognitive training (CT) and cognitive rehabilitation (CR) are particular treatments aimed to resolve memory and further areas of cognitive working in order to overcome these challenges. These are some of the different kinds of non-pharmacological treatments like reality orientation and skills training programs that can be used to deal with the cognitive and non-cognitive repercussions. The purpose of this review is to assess the efficacy and influence of cognitive training and cognitive rehabilitation in patients who are in their early phases of Alzheimer's disease or vascular dementia. These interventions are geared toward improving the patients' memory, in addition to other aspects of their cognitive functioning.
... 15-32. 6 STRAUSS, Anselm y CORBIN Juliet. Bases de la investigación cualitativa. ...
Esta investigación tuvo como objetivo identificar las tensiones que emergen entre los significados de los pacientes con demencia y sus asistentes, cuando toman decisiones sobre la atención en salud respecto a diagnóstico y tratamiento, o su participación en proyectos de investigación, en la Clínica de Memoria de la Facultad de Medicina de la Universidad Nacional de Colombia, sede Bogotá. Es un estudio descriptivo comprensivo, de corte transversal, que utilizó como estrategia de investigación las técnicas de revisión documental, cuestionarios y entrevistas. Se estableció el compromiso cognoscitivo y comportamental de los pacientes y se identificaron los significados no en términos lingüísticos, sino de la interpretación personal que atribuyen al diagnóstico y tratamiento de la demencia en el aspecto asistencial, y a la posibilidad hipotética de participar en proyectos de investigación relacionados. Durante el análisis se identificaron las tensiones entre esos significados y se cualificaron, según los principios bioéticos reconocidos. Como
hallazgo, emergió de los datos un principio: el altruismo.
... Die empathische Mitteilung einer gesicherten und schwerwiegenden Diagnose ist eine grosse Herausfor derung und erfordert viel Erfahrung und Professionalität [26]. Unter Umständen kann das Aussprechen der Diagno se eine gewisse Erleichterung bei den Betroffenen auslö sen, da es für die erlebten Probleme nun eine benennbare Erklärung gibt. ...
Zusammenfassung. Molekulare Liquormarker der Alzheimer-Kernpathologie (Amyloidpathologie, Tau-Hyperphosphorylierung und neuronaler Zelluntergang) sind Bestandteil des diagnostischen Instrumentariums zur Abklärung kognitiver Störungen im Alter. Sie erlauben eine frühere und präzisere Diagnose und werden von Swiss Memory Clinics als Zusatzdiagnostik nach individuell gestellter Indikation empfohlen. Aufklärung und Beratung sind sowohl vor als auch nach der Biomarker-Diagnostik erforderlich. Die Durchführung der diagnostischen Lumbalpunktion und der präanalytische Umgang mit den Proben richtet sich nach publizierten Standards. Die Interpretation der Resultate muss sorgfältig und im Gesamtkontext aller anderen Befunde erfolgen. Dank bedeutender Fortschritte ist zu erwarten, dass Blutbiomarker und andere kostengünstige und leicht zugängliche Marker sowie spezifische Biomarker für weitere Demenzursachen in wenigen Jahren zur Verfügung stehen werden. Dieser Trend dürfte zu einem deutlich breiteren Einsatz von Biomarkern führen und die Entwicklung wirksamer und personalisiert anwendbarer Präventions- und Behandlungsansätze beschleunigen. Unser Beitrag bietet einen Überblick über den Stand der Entwicklung und beinhaltet Empfehlungen der Swiss Memory Clinics zum Einsatz von Liquormarkern im diagnostischen Prozess. Biomarkers for the diagnosis of cognitive impairment – Recommendations from the Swiss Memory Clinics Abstract. Molecular cerebrospinal fluid (CSF) biomarkers of neurodegenerative diseases are now part of the established diagnostic tools for the clinical investigation of cognitive disorders in the elderly. Biomarkers allow for earlier and more accurate differential diagnosis, and are recommended by the Swiss Memory Clinics as an additional investigation based upon individual indication. Information and counselling are needed both before and after biomarker-supported diagnosis. The procedures for diagnostic lumbar punctures and pre-analytical sample handling should follow published recommendations. The results must be interpreted in the context of the other available history and assessment outcome. Thanks to recent research progress, blood-based biomarkers and other non-invasive markers are expected to become available for clinical practice in the near future. This trend will likely lead to a much broader utilisation of biomarkers and may accelerate the development of effective and individually tailored prevention and treatment approaches. This review article provides an overview over the current state of biomarkers and provides the recommendations of the Swiss Memory Clinics for their use in clinical practice. Les biomarqueurs dans le diagnostic des troubles cognitifs – Recommandation de Swiss Memory Clinics Résumé. Les biomarqueurs moléculaires du liquide céphalorachidien (LCR) de la pathologie de la maladie d’Alzheimer font désormais partie des outils diagnostiques établis pour l’investigation clinique des troubles cognitifs chez les personnes âgées. Les biomarqueurs permettent un diagnostic différentiel plus précoce et plus précis et sont recommandés par Swiss Memory Clinics en tant qu’examen complémentaire sur la base d’une indication individuelle. Il est indispensable que la situation soit éclaircie et soigneusement discutée avant et après un examen des biomarqueurs. Les procédures de ponction lombaire diagnostique et de manipulation pré-analytique des échantillons doivent en outre suivre les recommandations publiées. L’interprétation des résultats doit prendre en compte les antécédents médicaux et les autres résultats d’examens disponibles. Grâce aux progrès récents, des biomarqueurs sanguins et d’autres marqueurs non-invasifs pourraient être disponibles pour la pratique clinique dans un avenir proche. Cela pourrait conduire à une utilisation beaucoup plus large des biomarqueurs et devrait accélérer le développement d’approches de prévention et de traitement efficaces et personnalisées. Cet article de synthèse offre un aperçu de l’état des lieux des biomarqueurs et présente les recommandations de Swiss Memory Clinics concernant leur utilisation en pratique clinique.
... Similarly, we can argue that Alzheimer as an existential threat potentially has similar effects on patients with such disorder [6]. Moreover, several research suggested that after the diagnosis of Alzheimer with early stages, has profound psychological impacts on patients' purpose or meaning in life, self-esteem and general psychological wellbeing [14,17]. ...
... 22,23 Le transport de l'échantillon au laboratoire devrait idéalement se faire à l'état congelé, L'annonce d'un diagnostic grave peut représenter un défi important pour le clinicien et nécessite beaucoup d'expériences et de professionnalisme. 25 Dans certaines circonstances, elle peut déclencher un soulagement chez les personnes concernées, car il existe désormais une explication précise et nommable aux problèmes vécus. En outre, il existe un risque que l'annonce déclenche chez les personnes concernées des réactions psychologiques négatives comme la peur, la tristesse, la colère, la crainte de la stigmatisation ou même des pensées suicidaires. ...
Established cerebrospinal fluid (CSF) biomarkers allow for earlier and more accurate etiological diagnosis of cognitive impairment. Information and counselling are needed both before and after biomarker-supported diagnosis. The procedures for diagnostic lumbar punctures and pre-analytical sample handling should follow published consensus recommendations. The results must be interpreted in the context of the other available history information and assessments. Blood-based biomarkers and other non-invasive markers are expected to become available for clinical practice soon. Consequently, a broader usage of biomarkers is expected and may accelerate the development of individually tailored prevention and treatment approaches. This article provides the recommendations of the Swiss Memory Clinics for the use of biomarkers in clinical practice.
... On the other hand, participants in the intervention group showed no signs of psychological deterioration at 1-week post NPA feedback. We had anticipated, on the basis of findings related to dementia disclosure (Bamford et al., 2004;Draper et al., 2010;Jha et al., 2001), that there might have been a temporary deterioration in participant's mood immediately after the feedback as a result of receiving distressing information (Longley et al., 2012). However, there was no deterioration in mood or any other aspects of the participants' psychological wellbeing despite most participants (65%) receiving "bad news" confirming they had objectively-verified cognitive impairment. ...
... On the other hand, participants in the intervention group showed no signs of psychological deterioration at 1-week post NPA feedback. We had anticipated, on the basis of findings related to dementia disclosure (Bamford et al., 2004;Draper et al., 2010;Jha et al., 2001), that there might have been a temporary deterioration in participant's mood immediately after the feedback as a result of receiving distressing information (Longley et al., 2012). However, there was no deterioration in mood or any other aspects of the participants' psychological wellbeing despite most participants (65%) receiving "bad news" confirming they had objectively-verified cognitive impairment. ...
Evidence supporting the direct therapeutic benefits of neuropsychological assessment (NPA) feedback relies mostly upon post-feedback consumer surveys. This randomized-controlled trial with cross-over investigated the benefits of NPA feedback in multiple sclerosis (MS). Seventy-one participants were randomly allocated to NPA with feedback or a “delayed-treatment” control group. The primary hypotheses were that NPA feedback would lead to improved knowledge of cognitive functioning and improved coping. Outcome instruments were administered by a research assistant blinded to group allocation. At 1-week post-NPA feedback there were no significant group-by-time interaction effects, indicating no improvement. But nor was there any significant deterioration in psychological wellbeing, despite most participants receiving “bad news” confirming cognitive impairment. At 1-month follow-up, within-subjects’ analyses not only found no evidence of any delayed deterioration, but showed clinically significant improvement (small-medium effects) in perceived everyday cognitive functioning, MS self-efficacy, stress and depression. Despite lack of improvement in the RCT component at 1-week post-NPA feedback, the absence of deterioration at this time, in addition to significant improvements in perceived cognitive functioning, self-efficacy and mood at follow-up, together with high satisfaction ratings, all support NPA feedback as a safe psycho-educational intervention that is followed by improved psychological wellbeing over time.
Trial registration: Uniform Trial Number identifier: U1111-1127-1585.
Trial registration: Australian New Zealand Clinical Trials Registry identifier: ACTRN12612000161820.
... In previous times, it was believed that PwD do not need to know much about the disease due to missing curative treatments, but this perception has changed over the years. 69,70 One reason was that PwD might not cope well with the diagnosis, which can deteriorate the relationship between the doctor and the patient. On the other hand, advantages were seen in reducing uncertainty and having sufficient time to organize social support services, appropriate treatments, and plans for the future when symptoms start to worsen. ...
Background:
Knowledge about the priorities and preferences of people living with dementia (PwD) might help to individualize treatment, care, and support, which could improve patient-related outcomes. This study aimed to summarize preferences of PwD or people with mild cognitive impairment (MCI), considering all relevant aspects of health care and everyday life.
Methods:
We conducted a systematic literature review and included studies about patient preferences published in English between January 1, 1990 and October 28, 2019. The inclusion criteria were that preferences were elicited directly by PwD or patients with MCI. We used the International Consortium for Health Outcomes Management value set for dementia to categorize the preferences into the following topics: a) clinical status, b) symptoms, functioning, and quality of life, and c) sustainability of care.
Results:
Of 578 initially identified studies, 45 met the inclusion criteria. Patients preferred to be informed about the diagnosis as early as possible, especially for anticipatory care planning. They ranked caregiver quality of life as their highest priority. They preferred not to be a burden to others more than their caregivers' mood, their own functional status, or their own distressing behaviors. Furthermore, PwD are eager to participate in medical decisions, especially in those about creating an everyday life routine. PwD preferred their own quality of life, self-efficacy, and emotional well-being. Institutionalized PwD preferred individualized and person-centered care. According to the sustainability of care, PwD preferred to maintain close bonds with their family at the end of their life and wanted to be treated with empathy.
Conclusion:
This systematic review provides essential insights into cognitively impaired patients' preferences, which are rarely considered in treatment, care, and support services. Further studies should evaluate whether considering preferences in treatment and care or daily living can improve patient-reported outcomes.
... Clinical professionals describe the disclosure of a dementia diagnosis as a challenging task (Bamford et al., 2004), and clinicians may struggle with knowing what information should be disclosed, and to whom, as well as who is best suited to carry out the disclosure (see e.g. Phillips et al., 2012;Iliffe et al., 2006;Low et al., 2019). ...
... In most cases, those with cognitive impairments will be referred to specialist memory services. Specialist memory services offer timely differential diagnosis, which is beneficial for the person as it allows for better adjustment, slowing of progression and planning ahead, and there are also significant savings to the health economy (Bamford et al. 2004;Prince et al. 2011;Pratt and Wilkinson 2003;Banarjee and Wittenberg 2009 There is no single test for dementia, and diagnosis is made on the basis of excluding other causes for the symptoms and clinical impression. Dementia assessment at a specialist service generally involves a formal assessment of cognitive function, activities of daily living, social, educational and employment history and a collateral history from someone who knows the person well. ...
Diagnosing dementia can be challenging for clinicians, given the array of factors that contribute to changes in cognitive function. The Addenbrooke’s Cognitive Examination III (ACE-III) is commonly used in dementia assessments, covering the domains of attention, memory, fluency, visuospatial and language. This study aims to (1) assess the reliability of ACE-III to differentiate between dementia, mild cognitive impairment (MCI) and controls and (2) establish whether the ACE-III is useful for diagnosing dementia subtypes. Client records from the Northern Health and Social Care Trust (NHSCT) Memory Service ( n = 2,331, 2013–2019) were used in the analysis including people diagnosed with Alzheimer’s disease ( n = 637), vascular dementia ( n = 252), mixed dementia ( n = 490), MCI ( n = 920) and controls ( n = 32). There were significant differences in total ACE-III and subdomain scores between people with dementia, MCI and controls ( p < 0.05 for all), with little overlap between distribution of total ACE-III scores (< 39%) between groups. The distribution of total ACE-III and subdomain scores across all dementias were similar. There were significant differences in scores for attention, memory and fluency between Alzheimer’s disease and mixed dementia, and for visuospatial and language between Alzheimer’s disease–vascular dementia ( p < 0.05 for all). However, despite the significant differences across these subdomains, there was a high degree of overlap between these scores (> 73%) and thus the differences are not clinically relevant. The results suggest that ACE-III is a useful tool for discriminating between dementia, MCI and controls, but it is not reliable for discriminating between dementia subtypes. Nonetheless, the ACE-III is still a reliable tool for clinicians that can assist in making a dementia diagnosis in combination with other factors at assessment.
... A patient not understanding the gravity and nature of his diagnosis will not be able to make treatment decisions, and his decisions then shall have to be made by his family. Hence, the disclosure of diagnosis has many confounding variables that need to be assessed before a decision is made (Bamford et al., 2004). The diagnosis in medical care may often be made by a general physician, gerontologist, psychiatrist, neurologist or geriatric psychiatrist. ...
Dementia syndromes can include language impairments (LIs) of severity extending from lexical access difficulties within anomic aphasia to non-fluent effortful speech and semantic aphasia, depending on the stage and etiology of the underlying disease. Relevant etiologies include neurodegenerative Alzheimer’s disease (AD) and non-AD dementias, such as frontotemporal lobar degeneration (FTD), Parkinson’s (PD) and Lewy body diseases, vascular and toxic alcohol-related dementia, depressive pseudodementia and mixed type dementia. Irrespective of the underlying disease, LIs interfere with social contacts and personal relationships, thus substantially reducing the quality of life and daily functioning of patients, while increasing their need for supervision and care. Socio-linguistic discourse describes such patients as experiencing “loss of self”, “no meaningful present”, “active presence of the past in the body itself”, and as the “long goodbye” (Snyder in Dementia: Mind, meaning and the person, Oxford University Press, p. 268, 2006), highlighting the stigmatization and low quality of life of dementia sufferers. In this chapter we summarize the similarities and differences in clinical and linguistic presentations of LIs in AD and the most commonly occurring types of non-AD dementias, emphasizing the decisive diagnostic and prognostic roles of LIs, as well as their implications for choice of treatment. We present an account of the neuropsychological and psycholinguistic approaches to assess LIs occurring in dementia through evaluation of language functions/domains, such as sound-based domain and lexis (naming, reading, writing), syntax (repeating, composing sentences), and semantics, pragmatics, and discourse (comprehension—auditory, semantic knowledge, understanding commands). We discuss research findings on the protective properties of cognitive reserve, second language acquisition (L2), and multilingualism, all of which can delay the onset of dementia symptoms. We make note of the available interventions in the management of LIs, which include pharmacotherapy (acetylcholinesterase inhibitors such as donezepil, galantamine, and rivastigmine), cognitive interventions (lexical-semantic therapy, action-language therapy, language socialization), and other options of person-centered care (e.g., narrative care). We also review the benefits of destigmatization activities that can be obtained through building a dementia-friendly community environment.
... When dementia is diagnosed, it may not be disclosed (Bamford et al., 2004;Low et al., 2018). Concerns for people living with dementia may motivate practitioners and families to shield them from difficult information and decisions rather than facilitating their right to autonomy and selfdetermination (Lepore et al., 2017). ...
Involving people living with dementia in service design and planning has become more common in high-income countries. It remains rare in low- and middle-income countries where two-thirds of the world’s people with dementia live. In this commentary article, we explore the barriers to inclusion of people living with dementia in planning in low- and middle-income countries and make a case for the inclusion of people living with dementia in care and service planning. We suggest how this can be done at individual, community or national and state level using the following principles: 1) respecting the rights of people living with dementia to self-determination; 2) valuing people living with dementia’s unique understanding of dementia; 3) creating a culture of active inclusion which creates a space for people living with dementia to participate and 4) ensuring appropriate accommodations are in place to maximise participation.
... During the diagnosis disclosure conversations, participants did not always feel that they were the focus of the conversation. The disclosure of a diagnosis of dementia is a difficult task for practitioners (Bamford et al., 2004;Iliffe et al., 2003) and ...
Aim:
To describe older persons' experiences of a cognitive assessment and possible neuropsychiatric symptoms [NPS] related to a neurocognitive diagnosis.
Background:
A cognitive assessment in primary care is offered to persons with suspected dementia with subsequent referral to a specialist clinic if required. The assessment process, with the likelihood of receiving a dementia diagnosis, is surrounded by uncertainty with long waiting times. Although NPS are common among persons with cognitive impairment persons are not routinely asked about these symptoms during a cognitive assessment.
Method:
Interviews were held with 18 participants who had completed a cognitive assessment. The Neuropsychiatric Inventory [NPI] was incorporated into one of the interview questions enabling participants to self-report NPS, if present. Interview data were analysed using Interpretive Description.
Results:
Two main themes were identified: a matter of trust and making sense of a cognitive diagnosis. Experiences of the assessment process ranged from feeling valued to abandoned with variations of trust in the process. A diagnosis of mild cognitive impairment was experienced as an abstract diagnosis devoid of follow-up support. A lack of preparedness for the assessment existed among participants. Some experienced the process as standardised. One half of participants self-reported the presence of one to four NPS, regardless of neurocognitive diagnosis. Irritability and depression were most common NPS identified.
Conclusions:
Experiences of a cognitive assessment varied from feeling valued by society to abandoned in the absence of follow-up support. The assessment was viewed as a standardised procedure failing to see the person behind the testing. Diagnosis disclosure conversations were experienced as diffuse with participants unprepared for a dementia diagnosis. The NPI enabled participants to identify and report the presence of NPS which otherwise could go undetected during the cognitive assessment, impacting on the person's well-being and daily life.
... The rationale behind these efforts is that diagnosed people can plan ahead and be more involved with decisions about their well-being. Within this framework, we have only partial knowledge about the preferences of people with cognitive impairment regarding information about their condition and their relationship with their medical providers (Bamford et al., 2004). For example, ambivalent views emerge about receiving a diagnosis. ...
We sought to understand the expectations and concerns of older adults with cognitive impairment with regard to their relationship with medical providers. In particular, we observed whether study participants were involved in therapeutic alliances. Medical providers and patients create therapeutic alliances when they agree on the goals of the treatment and share a personal bond. Whereas such alliances have been studied in cancer research, little is known about therapeutic alliances in dementia research. Data were gathered in a qualitative study of 27 older adults with cognitive impairment and analyzed with narrative analysis. We introduce four case studies that illustrate the effects of having or missing a therapeutic alliance. Whereas the participant in the first case benefited from a therapeutic alliance, the other cases are marked by different experiences of abandonment. Findings suggest that interventions should concentrate on ways to enhance the relationship between medical providers and patients with cognitive impairment.
... Possible negative aspects of early dementia screening, such as initiating anxiety and/or depression and stigma (Panegyres et al. 2016), should be taken into serious consideration. Early disclosure of dementia is accompanied with risks both for the patient and the family and friends, including a preoccupation with the diagnosis, restriction of activities, higher vigilance from the family, distress, and increased anxiety (Wilcock and Carroll 2009;Bamford et al. 2004). However, the benefits of early screening for the patient and the patient's environment should not be underestimated (Cordell et al. 2013). ...
Alzheimer's disease (AD) precipitation in the elderly population increases the need for sensitive biomarkers that can be applied to large population screening. Buccal cells can be obtained easily, noninvasively, and contain many proteins related to cerebral processes. Hence, they offer an ideal candidate for AD biomarker discovery. The purpose of this study is to provide an overview of the current research landscape covering both clinical and methodological issues. A brief summary is given on related laboratory techniques to ascertain protein concentration changes due to AD. At the end, we describe a protocol designed in our laboratory for disease early diagnosis.
... In practice there is often 'fragmented care' (Robinson et al., 2010), and the metaphor of a dementia care 'journey' is often used (Teel & Carson, 2003). Much research has analysed specific parts of this 'journey', including the diagnosis and disclosure of dementia and the effect of this on care provision and receipt (Bamford et al., 2004;Bunn et al., 2012) with some of this informed by people living with dementia. Prorok, Horgan & Seitz's (2013) meta-ethnography of 46 qualitative studies of dementia care urged professionals to be continuously person-centred but they did not compare patient, carer and health care professional perspectives. ...
Background:
Many qualitative studies report the post-diagnostic care experiences of carers and people living with dementia; however, this is not often accompanied by opportunities to hear the corresponding views of their health care professionals and how this triadic relationship functions. The aim of this review was to identify and thematically synthesize the experiences of health care services reported by people living with dementia, their carers and health care professionals.
Methods:
Medline, PsycINFO, Embase and CINAHL were searched from inception to 31 July 2019 for qualitative research including people living with dementia, carers and health care professionals. Data were coded and thematically synthesised using NVivo.
Results:
Of 10,045 search results, 29 papers relating to 27 studies were included in the final synthesis, including 261 people living with dementia, 444 carers and 530 health care professionals. Six themes emerged related to the functioning of a dementia care triad: (1) involving the person living with dementia, (2) establishing expectations of care and the roles of the members of the triad, (3) building trust, (4) effective communication, (5) continuity of care and (6) understanding the unique relationship dynamics within each triad.
Discussion:
The interactions and complexity of triadic dementia care relationships further our understanding of how to improve dementia care. Awareness of possible diverging attitudes highlights areas of necessary improvement and further research into facilitating engagement, such as when multiple professionals are involved or where there are mismatched expectations of the roles of triad members. In order to operate efficiently as a triad member, professionals should be aware of how pre-existing relations can influence the composition of a triad, encourage the involvement of the person living with dementia, clarify the expectations of all parties, establish trusting relationships and enable communication within the direct triad and beyond.
... Previously, studies have found DMP to express uncertainty around diagnosis (Bamford et al., 2004). However, increasing rates of dementia diagnosis more recently perhaps reveals growing confidence (Donegan What is known about this topic • Both individuals being diagnosed with dementia and the professional giving the diagnosis find this experience difficult. ...
The experience of being diagnosed with dementia can be shocking. This may be compounded if individuals feel that there is a lack of signposting onto further avenues of
support following diagnosis. This study, then, examines how social support is promoted in the diagnostic process. Using purposive sampling and a grounded theory
approach, semi-structured interviews were conducted with 13 members of a dementia empowerment group in Northern Ireland, discussing both their experience
of diagnosis and also their subsequent group membership. Respondents reported
both positive and negative experiences of diagnosis. Feelings of shock and bewilderment accompanied this process. Only one was able to identify a direct link between
a medical professional and referral to the empowerment group, others being referred
by other health professionals or dementia navigators. The study indicates that, due
to disorienting feelings, one diagnostic consultation is insufficient to explain both the
diagnosis and offer follow-up support. Therefore, more explicit links to navigators
or other services need to be made at the point of diagnosis to prioritise information
regarding opportunities for social engagement for those being diagnosed.
... Timely diagnosis of dementia has been recognised as key in the improvement of dementia services and is supported by clinical guidelines and national dementia strategies across Europe 10,11 . Timely diagnosis enables planning for the future, the involvement of relevant support organisations and may help to relieve the psychological distress experienced by caregivers 12 (level of evidence 1). In patients with dementia who have Alzheimer's disease there is the potential for using cholinesterase inhibitors to modify symptoms and delay the need to seek nursing home care. ...
... Although the vast majority of patients with dementia report a preference for full disclosure, existing studies demonstrate wide variability in diagnosis sharing [6]. Physicians not sharing a dementia diagnosis may worry about harming the patient, disrupting the therapeutic alliance, precipitating depression, or burdening the patient and family with information about the possible lack of effective treatments [7]. Despite guidelines that emphasize sharing a dementia diagnosis, studies indicate serious divergence from these guidelines in actual practice. ...
Purpose of Review
This paper aims to examine diagnostic sharing of narcissistic personality from multiple vantage points and to describe strategies that might help clinicians in patient management.
Recent Findings
In recent years, clinicians increasingly have been motivated to discuss with patients the diagnosis of borderline personality disorder (BPD), an intervention bolstered by the emergence of empirically validated treatments for BPD and by advocacy organizations calling for diagnostic sharing. Despite these advances, clinical experience suggests that the diagnosis of narcissistic personality, including narcissistic personality disorder (NPD) or clinically significant narcissistic traits, is rarely shared with patients. We review emerging information about diagnostic classification and assessment, epidemiology, heritability, neurobiology, prognosis, and the utility of evidence-based treatments, which may facilitate a conversation on diagnosis (as demonstrated in multiple clinical scenarios provided as examples).
Summary
Diagnostic sharing has become a central element in the informed consent process. Understanding the risks and benefits of sharing a diagnosis of narcissistic personality is essential for clinical practice.
... Further, GPs' decisions to diagnose dementia have been shown to be influenced by their own beliefs about dementia and the efficacy of treatment [18]. However, these studies have tended to focus on a limited set of attitudes [15,19,20] and have rarely examined the association with GPs' current management of dementia patients [21,22]. ...
Background
Dementia is often underdiagnosed in general practice, which may be based on general practitioners’ (GPs’) knowledge and emotional factors as well as external problems. This study aimed to describe GPs’ attitudes toward early diagnosis of dementia.
Methods
Cross-sectional postal survey in Switzerland in 2017. Members of the Swiss Association of General Practitioners (N = 4460) were asked to participate in the survey. The questionnaire assessed attitudes, enablers and barriers to early dementia diagnosis and post-diagnostic intervention strategies. Exploratory factor analysis and linear regression were used.
Results
The survey response rate was 21%. 85% of GPs agreed with enablers of early dementia recognition (e.g. “Plan for the future, organize support and care”, “Minimize the strain and insecurity of patients and their informal family caregivers”). On the other hand, 15% of respondents perceived barriers towards early dementia recognition (e.g. “Time constraints in carrying out the necessary procedures to diagnose dementia”). GPs who were more likely to agree with barriers would less often counsel family members (β = − 0.05, 95% CI = − 0.09 - -0.02) or test fitness to drive (β = − 0.05, 95% CI = − 0.09 - -0.02), and more often choose a watchful waiting strategy (β = 0.05, 95% CI = 0.02–0.09).
Conclusions
The attitude of the majority of GPs is not characterized by diagnostic and therapeutic nihilism. However, negative attitudes were associated with sub-optimal management after the diagnosis. Thus, health systems are required to critically examine the use of available resources allowing GPs to look after patients and their relatives in a holistic way.
Electronic supplementary material
The online version of this article (10.1186/s12875-019-0956-1) contains supplementary material, which is available to authorized users.
... Dementia is a worldwide public health priority that affects 35.6 million people worldwide and this number will double in 2030 (World Health Organization [WHO], 2012). Receiving a diagnosis of dementia has a major impact on psychological wellbeing, both for the persons with dementia as well as the informal caregivers (Bamford et al., 2004). Informal caregivers, often the partner or a relative, fulfill an important role in the care for a person with dementia (PwD). ...
Objective
Studies have shown preliminary support for mindfulness-based interventions benefitting people with dementia and their caregivers. However, most studies focus on these two groups separately. This study examined whether it would be possible and beneficial for people with dementia and their caregiver to jointly undergo an adjusted Mindfulness-Based Stress Reduction (MBSR) training, named TANDEM.Methods
The 8-week MBSR training was adjusted based on a literature review and interviews with experts (clinicians and mindfulness trainers). Seven couples (a person with early-stage dementia and their caregiver) participated together in the 8-week TANDEM program. Semi-structured qualitative interviews were conducted after completion. Questionnaires (administered before and after the intervention) assessed the primary outcomes of quality of life and psychological distress (stress, anxiety and depressive symptoms). Secondary outcomes were mindfulness, self-compassion, positive mental health, worrying, and perceived burden (for caregivers).ResultsAll participants completed the program and reported beneficial effects (relaxation, awareness, acceptance, and resilience). Most managed to integrate exercises into their daily lives and planned to continue their practice. Participating in a group was considered valuable and supportive. Furthermore, it was appreciated that participants could follow the training together (as a couple). The quantitative results showed a small effect on increased quality of life for caregivers. No substantial decrease in psychological distress was apparent. Caregivers displayed a large increase in mindfulness.Conclusion
The results of this mixed-methods study suggest that an adjusted mindfulness program is feasible and well-received among couples of persons with early-stage dementia and their caregiver, warranting further research in this area.
... People with dementia and their families frequently do not take up referrals or link in with supports at the time of diagnosis which may increase burden and make later stages of dementia more difficult to navigate (Aminzadeh et al., 2007;Bamford et al., 2004;Brodaty et al., 2005;Bunn et al., 2012). Key models explaining resource utilisation in dementia explain only a small percentage of the variance (Markle- Reid & Browne, 2001) indicating that other factors may exist. ...
Background:
At time of diagnosis, people with dementia and their carers can access support services to help them to plan for their future care needs, but often they do not engage with these services. It is not clear why this occurs but a potential explanation explored in this paper is that disclosure of a dementia diagnosis is an overwhelming and highly stressful event that may lead to behavioural avoidance in the manner of post-traumatic stress. In this study we use a post-traumatic stress screening tool to determine whether being diagnosed with dementia shares some qualitative similarities with post-traumatic stress disorder and explore whether this is associated with a reduced likelihood to engage support services following diagnosis.
Method:
We conducted a small pilot study through the local memory clinic with eight people with dementia and 11 carers returning surveys. Participants completed the Impact of Events Scale-Revised, a validated post-traumatic stress disorder screening tool, and also provided information regarding their experience of the diagnosis and subsequent use of support services.
Results:
One person with dementia and two carers had scores on the Impact of Events Scale-Revised indicating a probable diagnosis of post-traumatic stress disorder and two people with dementia and two carers scored within the range of clinical concern. The average Impact of Events Scale-Revised score of those who had taken-up a referral to home support was significantly lower than those who had not.
Conclusion:
A dementia diagnosis can be associated with symptoms that are consistent with post-traumatic stress, which in turn may affect engagement with support services.
... This stigmatisation of older people in hospitals is particularly acute for people living with dementia. 47 The poor recognition and systematic undertreatment of post-operative pain among people living with dementia: 48,49 illustrates the discriminatory care provided for people with dementia. p. 62. 12 © Crown copyright. ...
Background
The acute hospital setting has become a key site of care for people living with dementia. The Department of Health and Social Care recognises that as many as one in four acute hospital beds in the UK will be occupied by a person living with dementia at any given time. However, people living with dementia are a highly vulnerable group within the hospital setting. Following an acute admission, their functional abilities can deteriorate quickly and significantly. Detailed research is required to understand the role and needs of health-care staff caring for this patient population and to explore what constitutes ‘good care’ for people living with dementia within the acute setting.
Objectives
The focus of this study was a common but poorly understood phenomenon within the acute setting: refusal and resistance to care. Our research questions were ‘How do ward staff respond to resistance to everyday care by people living with dementia being cared for on acute hospital wards?’ and ‘What is the perspective of patients and their carers?’.
Design
This ethnography was informed by the symbolic interactionist research tradition, focusing on understanding how action and meaning are constructed within a setting. In-depth evidence-based analysis of everyday care enabled us to understand how ward staff responded to the care needs of people living with dementia and to follow the consequences of their actions.
Setting
This ethnography was carried out on 155 days (over 18 months) in 10 wards within five hospitals across England and Wales, which were purposefully selected to represent a range of hospital types, geographies and socioeconomic catchments.
Participants
In addition to general observations, 155 participants took part directly in this study, contributing to 436 ethnographic interviews. Ten detailed case studies were also undertaken with people living with dementia.
Results
We identified high levels of resistance to care among people living with dementia within acute hospital wards. Every person living with dementia observed within an acute hospital ward resisted care at some point during their admission.
Limitations
Limitations identified included the potential for the Hawthorne or researcher effect to influence data collection and establishing the generalisability of findings.
Conclusions
Ward staff typically interpreted resistance as a feature of a dementia diagnosis, which overshadowed the person. However, resistance to care was typically a response to ward organisation and delivery of care and was typically rational to that person’s present ontology and perceptions. In response, nurses and health-care assistants used multiple interactional approaches that combined highly repetitive language with a focus on completing essential care on the body, which itself had a focus on the containment and restraint of the person in their bed or at their bedside. These approaches to patient care were a response to resistance but also a trigger for resistance, creating cycles of stress for patients, families and ward staff. The findings have informed the development of simple, no-cost innovations at the interactional and organisational level. A further study is examining continence care for people living with dementia in acute hospital settings.
Funding
The National Institute for Health Research Health Services and Delivery Research programme.
... The Fears and Frustrations subscale reflects frustration with and/ or avoidance of treating dementia, and includes difficulty in diagnosing dementia or the management of dementia related symptoms [5,14] and a preference for treating other conditions. The Attitude to Communication subscale reflects perspectives on diagnosis disclosure to the patient so they can plan for the future [18], as well as informing patients and their families of the terminal nature of the condition [1]. The preliminary GPACS-D scale demonstrated sound psychometric properties, with each survey item exhibiting good test retest reliability, sensitivity to change and good internal consistency [15]. ...
Background
The attitude of General Practitioner’s (GP’s) towards dementia and confidence in their clinical abilities impacts on diagnosis rates and management of the condition. The purpose of the present research is to refine and confirm the reliability and validity of the General Practitioner Attitudes and Confidence Scale for Dementia (GPACS-D) as a tool to measure confidence and attitude.
Methods
A sample of 194 GP volunteers attending dementia education workshops were recruited to complete the GPACS-D before and after the workshop. Volunteer respondents comprised both GP Registrars and GP Supervisors. Analyses included Confirmatory Factor Analysis (CFA), measures of internal consistency, Pearson correlations, and a comparison of subscale scores between cohorts (T-Test for independent samples).
Results
Findings of the CFA support a 15-item, 3-factor model with four items removed due to poor performance and one item moved between factors. The resultant model exhibited good fit (x² = 103.88; p = .105; RMSEA = .032; PCLOSE = .915; CFI = .967; TLI = 960), with acceptable internal consistency. Subscales exhibited clear discriminant validity with no underlying relationships between subscales. Finally, total and subscale scores exhibited good discrimination between groups who would be expected to score differently based on experience and level of exposure to dementia.
Conclusion
The 15-item, 3-subscale GPACS-D is a reliable and valid measure of GP confidence and attitudes toward dementia. The subscales clearly distinguish between groups who might be expected to score differently from each other based on their training or professional experiences. The psychometric properties of the GPACS-D support its use as a research tool.
Background
Understanding the experiences of older adults living with MCI can benefit healthcare professionals in diagnosing and implementing early interventions to delay cognitive decline.
Objective
To assess and synthesize qualitative research exploring the experience of older adults diagnosed with MCI.
Methods
PubMed, Embase, CINAHL, Web of Science, and PsycINFO databases were searched. Studies involving the experience of being diagnosed with MCI in older adults were included. Thomas and Harden's methodology of synthesizing qualitative studies was used.
Results
Eleven studies were included. Three themes were identified: perceived reality of the MCI diagnosis; emotional and psychological responses to the MCI label; coping engaged in parallel processing. Older adults had confusing perspectives on the MCI diagnosis, leading to complicated and diverse emotional reactions and coping measures.
Conclusions
The relationship between perspectives, emotional reactions, and coping methods might be the key for healthcare professionals to break through the early diagnosis and intervention of MCI.
Biomarkers for the diagnosis of cognitive impairment - Recommendations from the Swiss Memory Clinics Abstract. Molecular cerebrospinal fluid (CSF) biomarkers of neurodegenerative diseases are now part of the established diagnostic tools for the clinical investigation of cognitive disorders in the elderly. Biomarkers allow for earlier and more accurate differential diagnosis, and are recommended by the Swiss Memory Clinics as an additional investigation based upon individual indication. Information and counselling are needed both before and after biomarker-supported diagnosis. The procedures for diagnostic lumbar punctures and pre-analytical sample handling should follow published recommendations. The results must be interpreted in the context of the other available history and assessment outcome. Thanks to recent research progress, blood-based biomarkers and other non-invasive markers are expected to become available for clinical practice in the near future. This trend will likely lead to a much broader utilisation of biomarkers and may accelerate the development of effective and individually tailored prevention and treatment approaches. This review article provides an overview over the current state of biomarkers and provides the recommendations of the Swiss Memory Clinics for their use in clinical practice.
Objectives:
The disclosure of an Alzheimer's disease diagnosis poses challenges for health care professionals, patients, and their families. Past research has shown that people favour disclosure, but it is uncertain if this situation has changed.
Method:
We used a cross-sectional online survey to explore disclosure preferences in a sample of young adults (n = 229; 66.7% aged 18 - 25 years, 79.5% Australian born). Factors contributing to preferences were also examined (knowledge, experience, close experience, age, relationship to diagnosis recipient). Established measures were used to assess knowledge (the Alzheimer's Disease Knowledge Test) and preferences (the Reasons for Wanting to Know Questionnaire).
Results:
Most (95%) but not all participants favoured disclosure, whilst recognising as important at least one reason against it. Only age was a significant determinant of preferences (older people were more likely to prefer disclosure). Those against disclosure cited the fear of suicide as a key reason.
Conclusion:
The right to know remains a primary reason for preferring disclosure. Health care professionals should use pre-diagnostic interviewing to discuss overall preference and the underpinning reasons both for and against disclosure. Focus should be on developing a person-centred approach that responds to concerns, with further research to evaluate this approach.
Points essentiels
Le dépistage et le diagnostic précoce de la maladie d’Alzheimer (MA) permettent d’optimiser la prise en charge des patients et de minimiser les coûts en santé publique.
Les sociétés savantes et les associations de patients insistent sur les bénéfices de l’annonce de MA mais, en pratique, près de la moitié des patients n’auraient pas de diagnostic posé, en raison de réticences essentiellement psychologiques.
En pratique, une annonce réalisée dans le cadre d’une démarche structurée, évolutive, dynamique, et personnalisée, impliquant trois grands temps, permet de lever la majorité des freins.
Dans les prochaines années, la mise à disposition de biomarqueurs facilement accessibles, une meilleure formation des médecins à l’intérêt de l’annonce, et une réorganisation du système de santé, devraient permettre de faciliter l’annonce du diagnostic de MA.
As the world population ages, there is a large number of people with dementia that shall dwell in our nations with the years to come. The growing number of individuals suffering from dementia shall escalate the ethical issues related to dementia that are relevant for clinical practice and research. Some of these issues and overview of them shall be addressed in the current chapter. These include issues early detection and diagnosis, issues in dementia related to genetic testing, the role of neuroscience to enhance cognition in these subjects, ethical issues with the use of medications in mild cognitive impairment. There are also other ethical dilemmas related to proper diagnostic disclosure, apt informed consent procedures, proper conflict of interest declarations, research study issues in dementia care trials, issues with the use of placebo and the medical treatments in these subjects. This moves on to issues in the late stages of dementia, framing of therapeutic goals and end-of-life care in these patients. Issues related to old-age home care, testamentary capacity, certification, human rights, elder abuse and many such factors are discussed.
Background
Research suggests there is a lack of post-diagnostic support to enable people living with dementia to fulfil social and active lives throughout their dementia journey. Gardening has been found to have many benefits for people living with dementia. Although such research is important, most research frames people with dementia as passive recipients of stimulation. Research into the impact of a community-based gardening group, where people living with dementia are active in the development of an outdoor space, is underdeveloped. Knowledge about the impact of participating in such groups is also sparse. The Good Life Club (GLC) was co-developed and evaluated to respond to these gaps.
Objectives
The primary aim of this article is to present the findings regarding the impact of attending the GLC on the self-reported well-being for people living with dementia and care partners.
Methods
Qualitative data were collected via 22 semi-structured interviews. Fourteen interviews were conducted before the GLC and eight after the GLC. Thematic analysis was used to analyse data. Dementia Care Mapping data were collected to supplement the interview data.
Findings
Four key themes were identified. The first was that participants considered having active participation in social life to be a key aspect of living a good life. The second was that the way that the GLC was set up and delivered gave the participants ownership of the GLC and within this they felt able to contribute. The third was the importance of social connectedness and peer support to the well-being of both people living with dementia and care partners. Fourth, positive mood and well-being was directly experienced through gardening.
Conclusions
The combination of long-term investment of time and energy to the GLC, ongoing friendships and in-session autonomy act as key ingredients in creating a group that is relaxed, full of humour and highly valued.
Nowadays, Alzheimer's disease (AD) diagnosis is considered to be a crucial and extremely complex process. Nevertheless, psychometric tools, like Mini-Mental State Evaluation (MMSE), are used to address cognitive function assessment and clinical evaluation processes. However, MMSE's sensitivity in the diagnosis of mild cognitive impairment is debatable in terms of education, age, or nationality. Typical psychometric tools with the use of "paper and pencil" methods combined with physiology measurements are proposed in order to enhance validity and effectiveness in the case of Alzheimer's disease cognitive deficits. The objective of this review study is to highlight the effectiveness of brief cognitive tests (BCT) in the case of dementia and Alzheimer's disease screening. Authors' future work will focus on the application of BCT in MCI diagnosis and evaluation.
Objectives
This study assessed the impact of a Dementia Education Workshop on the confidence and attitudes of general practitioner (GP) registrars (GPR) and GP supervisors (GPS) in relation to the early diagnosis and management of dementia.
Design
Pretest post-test research design.
Setting
Continuing medical education in Australia.
Participants
332 GPR and 114 GPS.
Interventions
Registrars participated in a 3-hour face-to-face workshop while supervisors participated in a 2-hour-modified version designed to assist with the education and supervision of registrars.
Main outcome measures
The General Practitioners Confidence and Attitude Scale for Dementia was used to assess overall confidence, attitude to care and engagement. A t-test for paired samples was used to identify differences from preworkshop (T1) to postworkshop (T2) for each GP group. A t-test for independent samples was undertaken to ascertain differences between each workshop group. A Cohen’s d was calculated to measure the effect size of any difference between T1 and T2 scores.
Results
Significant increases in scores were recorded for Confidence in Clinical Abilities , Attitude to Care and Engagement between pretest and post-test periods. GPR exhibited the greatest increase in scores for Confidence in Clinical Abilities and Engagement .
Conclusions
Targeted educational interventions can improve attitude, increase confidence and reduce negative attitudes towards engagement of participating GPs.
Dementia is a disabling, highly prevalent condition in older age. Complexities related to dementia care challenge the existing models of health and social services. Although for most people in Western Europe the first contact point for health-related concerns is a general practitioner, the role of primary care physicians and primary care teams regarding older people with dementia needs clarification. Primary care has much to offer to older people with dementia and their informal, family carers, but several challenges still need to be addressed. Given that the perspectives of people with dementia, their carers and staff regarding the role of primary care in dementia may share several points, it seems possible to define priority areas for intervention. Despite a growing number of studies on dementia care delivery in primary care, interventions addressing a wide range of important outcomes in dementia (e.g. falls, frailty) are overlooked in the research agenda; this probably hinders the quality of health care provided. At the end of the chapter, we finally discuss how current knowledge on dementia care fits into the Portuguese health and social care systems, as a case study example.
A diagnosis of dementia threatens not only many of the core aspects of what it is to be human, but leads, through a progressive deterioration, to death. Dementia thus represents an existential threat that creates profound emotional and psychological challenges for those who are directly affected by the illness. In this chapter, we argue that the psychological threat dementia represents needs to be viewed within the context of research from social psychology, and in particular Terror Management Theory (TMT). TMT proposes that humans experience a basic psychological conflict that results from having a self-preservation instinct on the one hand while on the other hand also knowing that death is inevitable. As a way of managing the distress that would otherwise arise from this knowledge, a series of defences operate to build psychological resilience and to reduce or to eliminate awareness of death. These defence strategies include the person investing themselves in religious and cultural belief systems which hold the possibility of spiritual immortality, as well as internal psychological processes such as repression and avoidance. We explore how the TMT framework might help us to make sense out of the experiences of people living with dementia.
Objectives
To assess improvements in dementia knowledge among general practitioner (GP) registrars and supervisors following their participation in dementia workshops.
Design
Pre–post intervention study.
Setting
General practice education in Australia.
Participants
296 GP registrars and 91 GP supervisors.
Interventions
Registrars participated in a 3-hour face-to-face workshop on diagnosing and managing dementia. Supervisors participated in a 2-hour modified version of the workshop designed to support them in teaching registrars.
Main outcome measures
The Dementia Knowledge Assessment Scale (DKAS) was used to assess overall dementia knowledge as well as knowledge on four subscales (causes and characteristics; communication and behaviour; care considerations; risks and health promotion). Changes in mean scores and the proportion of participants obtaining a threshold score (90th percentile score preworkshop) were used as measures of improvement.
Results
Few registrars and supervisors identified previous experience of formal dementia education. At baseline, mean dementia knowledge scores were 36 for registrars and 37 for supervisors of a total score of 50. Both groups had significantly improved overall dementia knowledge following the workshop with a mean score of 43. Improvements in knowledge were observed for all four DKAS subscales. Between preworkshop and postworkshop periods, there was an increase in the proportion of registrars and supervisors obtaining the threshold score for total DKAS as well as the four subscales. A significantly higher proportion of registrars compared with supervisors obtained the threshold score postworkshop in the areas of causes and characteristics and risks and health promotion.
Conclusions
Prior to the workshop, no differences in overall dementia knowledge were observed between registrars and supervisors. While knowledge improved in all areas for both groups postworkshop, findings from this study suggest the need to include foundational content such as the causes and characteristics of dementia in educational workshops for both trainee and experienced GPs.
Background: Music is the most commonly accessed arts-based activity for people living with dementia, but the evidence-base for the use of music is currently lacking. This is because much of the research in this area uses a biomedical lens to understand musical experience, placing a focus on how music might alleviate the 'behavioural and psychological symptoms of dementia' rather than exploring the role of music as meaningful and stimulating activity through which a person with living dementia can flourish. Qualitative research suggests that the main benefits of music lie 'in the moment' with music providing a platform for multisensory experiences that are embodied and relational. To date, there are no research studies which have sought to understand the 'in the moment' musical experiences of people living with dementia where the focus is on embodied and sensory experiences.
Aims: This thesis used a multiple-case study design to develop a thematic description of the 'in the moment' embodied and sensory experiences of people living with dementia when they engage with music. The setting for this study was Manchester Camerata's Music in Mind: an innovative improvisation-based music programme for people living with dementia. Six people living with dementia were recruited into the study, along with four family carers and two Music in Mind practitioners. Each case study presented the individual 'in the moment' experiences of each person living with dementia, while a cross-case analysis of the data examined the elements of experience which were translatable across participants.
Findings: A range of embodied and sensory experiences were observed 'in the moment' during the Music in Mind sessions. The six individual case studies narrated the experiences of each person living with dementia across the Music in Mind programme, and presented a number of key observations which focused on embodied and sensory experiences. The thematic description of 'in the moment' experience presented in the cross-case analysis of data presented three interacting master themes: Living a Life Story through Music; Being 'In the Moment' with Music; and Musical Ripples into Everyday Life. Each of these themes was dynamic and contextualised the 'in the moment' experiences of each person living with dementia. The cross-case analysis also presented measurable qualities of experience which were observable across the people living with dementia. Such measurable qualities were directly observable, providing a tangible means by which to examine core features of 'in the moment' musical experience.
Conclusions: The study contributes to knowledge by presenting a thematic description of 'in the moment' musical experience combined with measurable qualities of the sensory and embodied experiences. This thematic description will form the basis of a new music assessment framework (In the Moment Profiles) which will enable the recording of individual musical stories as well as measurable qualities of experience which can be compared across individuals. This framework places emphasis on music and creativity, which is in direct contrast to the current methods of evaluation that are used to measure the benefits of music for people living with dementia.
AIMS AND METHOD
We undertook a postal questionnaire survey of all consultant psychiatrists working in Scotland to examine whether psychiatrists themselves may contribute to the misunderstandings surrounding schizophrenia by avoiding discussion of the diagnosis with their patients.
RESULTS
Two-hundred and forty-six (76%) responded. Ninety-five per cent thought the consultant psychiatrist was the most appropriate person to tell a patient their diagnosis of schizophrenia, although only 59% reported doing so in the first established episode of schizophrenia, rising to 89% for recurrent schizophrenia. Fifteen per cent would not use the term ‘ schizophrenia’ and a variety of confusing terminology was reported. Over 95% reported telling patients they had mood disorders or anxiety, under 50% that they had dementia or personality disorders.
CLINICAL IMPLICATION
Greater openness by psychiatrists about the diagnosis of schizophrenia may be an essential first step in reducing stigma.
This study provides information on the expectations that family caregivers of Alzheimer's and dementia patients and primary care physicians have of each other in relation to the medical encounter. In many respects, caregiver and physician recollections of what transpired in the medical encounter are similar. Overall, caregivers tend to evaluate their encounters with physicians positively. However, compared to physicians, caregivers tend to rate more highly the amount of information given to and the attention paid to the concerns and expectations of family caregivers. This is particularly true in relation to issues such as physician sensitivity to caregiver distress, making caregivers feel that what they say is important, telling caregivers all they need to know about the illness, and verbal acknowledgement of the caregivers' contributions. In an era of managed care, physicians may have to devise new strategies to effectively meet the needs and expectations of their Alzheimer V/dementia patients and their family caregivers.
The role of carers is explored in the process beginning with the early detection of changes in cognitive function through to the diagnosis of dementia. Carers were not always aware of early cognitive decline before other family and friends. Forty-five per cent of initial diagnoses were made by GPs. In over 50% of cases, the sufferer had not been told their diagnosis by health professionals or carers. A quarter of carers wanted more information about dementia even after referral to specialist services. The importance of early referral and provision of sufficient comprehensive information about dementia are discussed. The role of carers in the early detection of changes in cognitive function of people with dementia, as well as their attitudes to the diagnostic process and its sequelae, have not been subject to close examination. The most commonly reported part of this process has been that of the psychiatrist's role in communicating the diagnosis of dementia (Rice & Warner, 1994). Caring for someone with dementia is associated with depression in 30-50% of cases (Coope et al, 1995). The early detection of cognitive impairment, adequate information about dementia from health professionals, and subsequent mobilisation of appropriate services may therefore reduce morbid ity in the mental health of sufferers and carers and be seen as examples of 'good practice' (Wattis, 1996). This study aimed to explore three particular areas: the involvement of carers in the initial detection of dementia, their attitudes towards the way in which the diagnosis was communicated, and attitudes towards sharing the diagnosis with the sufferer.
Eighty-eight family caregivers were interviewed concerning their experience with medical care of their demented relatives. Although the majority of caregivers expressed overall satisfaction, they showed higher levels of dissatisfaction than are commonly found in studies of satisfaction with medical care. Greatest dissatisfaction was expressed in regard to receiving insufficient information about dementia; fewest concerns were expressed about inappropriate physician control. Families reported frequently receiving vague diagnoses and insufficient referrals for supportive services.
Some patients with schizophrenia are not told their diagnosis. The moral, clinical and practical issues involved in telling or not telling the patient are discussed. In some cases a relative is told the diagnosis but not the patient. The implications for the family and clinical outcome are outlined. A case history illustrating some of these issues is presented.
To discover cancer patients' views about disclosure of information to their family, their family's influence over the information given them, and their preferences for doctors' behaviour if they and their family disagree, as a complement to applied ethical theory.
Semistructured interviews followed by qualitative content analysis.
Mainly urban British general practice.
30 patients in whom cancer, excluding basal and squamous cell skin carcinomas, was diagnosed 1-7 years earlier.
All subjects wished doctors to respect their views rather than those of their family, should they differ. With their consent, subjects favoured close family receiving information about their illness, all but one mentioning advantage to their family. Without such consent, six unconditionally favoured disclosure of information to their family while seven unconditionally opposed disclosure. Seventeen participants restricted their approval for such disclosure to specific circumstances. Only two participants approved of their family influencing the information that they received about their illness; all but seven wished to receive full information, the exceptions relating to information about bad prognosis.
Subjects favoured openness with their family but most rejected unconditional disclosure of information without their consent and their family influencing what information they would be given. They valued respect for their autonomy more highly than beneficence and considered that their own needs took priority over those of their family.
To assess the needs of patients with cancer for information about their condition.
Cross sectional survey of patients' views by means of semistructured interview with questionnaire.
A regional cancer centre and two university hospitals in west Scotland.
250 (93%) of 269 cancer patients invited to participate in study who were selected by age, sex, socioeconomic status, and tumour site to be representative of cancer patients in west Scotland.
Patients' need to know whether they had cancer, the medical name of their illness, progress through treatment, how treatment works, side effects, chances of cure, and treatment options.
79% (95% confidence interval 73% to 84%) of patients wanted as much information as possible, and 96% (93% to 98%) had a need or an absolute need to know if they had cancer. Most patients also wanted to know the chance of cure (91% (87% to 94%)) and about side effects of treatment (94% (90% to 97%)). When the replies were cross tabulated with patients' age, sex, deprivation score, and type of treatment there was a linear trend for patients from more affluent areas to want more information and those from deprived areas to want less. There was a strong preference for diagnosis of cancer to be given by a hospital doctor (60% (53% to 66%).
Almost all patients wanted to know their diagnosis, and most wanted to know about prognosis, treatment options, and side effects.
These guidelines summarize the content of meetings of family caregivers and individuals with dementia of the Alzheimer's type who identified and spoke on ethical issues in dementia care and who engaged in dialogue with an interdisciplinary and interprofessional group of individuals working in the field of Alzheimer's disease. This inductive method begins with attentive listening to the voices of the affected population and family members, in contrast with a theoretical and deductive approach to ethics.
In answer to a questionnaire administered in 1961, 90% of responding physicians indicated a preference for not telling a cancer patient his diagnosis. To assess attitudinal changes, the same questionnaire was submitted to 699 university-hospital medical staff. Of 264 respondents, 97% indicated a preference for telling a cancer patient his diagnosis—a complete reversal of attitude. As in 1961, clinical experience was the major policy determinant, but the 1977 population emphasized the influence of medical school and hospital training. Our respondents indicated less likelihood that they would change their present policy or be swayed by research. Clinical experience was the determining factor in shaping two opposite policies. Physicians are still basing their policies on emotion-laden personal conviction rather than the outcome of properly designed scientific studies.(JAMA 241:897-900, 1979)
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.
General practitioners (GPs) and their teams are uniquely situated to achieve early diagnosis and optimal management in the community of dementia, yet there is evidence of under-diagnosis, under-response to established dementia, and inadequate management. An educational agenda has been proposed on the basis of a review of existing studies and a national training programme has been designed to test the feasibility, acceptability and relevance of this agenda for primary care workers in the UK. A nationwide programme of workshops was successfully implemented, using educational methods based on adult learning principles, and received a very positive response from a multidisciplinary audience. This educational agenda has been shown to be congruent with the reported experiences of primary care workers, particularly GPs. Community psychiatric nurses (CPN) emerge from the findings of this study as a professional group who might have an important educational role for other professionals in primary care.
As the size of the older population increases, primary care physicians can expect to see growing numbers of patients who present with symptoms of cognitive dysfunction. This study examines how office-based primary care physicians in three states (N = 498) diagnose and manage dementia symptoms using clinical vignettes portraying a 72-year-old woman with either mild or moderate dementia symptoms and her adult daughter. Physicians were more likely to order a variety of laboratory tests than to perform mental and cognitive status tests as part of a diagnostic workup. Respondents also were much more likely to disclose a diagnosis of probable Alzheimer's disease to the daughter in the vignette than to her mother. Differences in reported dementia management behaviors were found according to physician specialty, number of years in practice, and experience with patients with dementia in actual practice. Results suggest that whereas primary care physicians can play a valuable role in the service system for families affected by dementia, barriers must be overcome to improve specific aspects of their diagnostic and management behaviors.
There has been growing discussion in the literature about the merits and demerits of disclosing a diagnosis to a person with dementia. There is growing empirical evidence that general practitioners (GPs) are reluctant to share the diagnosis with people with dementia. To date little research has examined what GPs tell their patients and their families. The purpose of the reported study was to examine what GPs tell people with dementia and their families about the condition. The study relied on data gathered from an opportunistic sample of 114 GPs who were attending a training course in care of people with dementia. Findings reveal a disparity between what GPs tell the family and the person. People with dementia tend to be given information about the symptoms and the cause is described predominantly as part of ageing. Family members are given information about symptoms, cause, prognosis and available supports. Best practice regarding diagnosis disclosure to people with dementia needs to be established. This includes what people with dementia are told, how they are told and what supports are made available to those who have been told.
Based on the findings of the study `Tell me the truth': A subjective understanding of diagnosis disclosure (Pratt & Wilkinson, 2001), this article proposes a psychosocial model for understanding the experience of people with dementia. The model operates on two main aspects, the combined desire and/or ability to know the diagnosis, and the social context that surrounds an individual. The model proposes that these two aspects are inexorably linked and are represented as two axes. There are four `quadrants' represented in the model: detachment, distress, maximizing coping, and decline and denial. The model proposes that individual experience can be located in any of these `quadrants' as a function of the combined effect of social context, alongside individual response. The model proposes that social context can contribute to the experience of `distress' or the ability of individuals to access `maximizing coping strategies'. In terms of diagnosis disclosure the model advocates that when an individual shows an `ability and desire' to know their diagnosis, withholding the diagnosis may directly contribute to feelings of distress. This situation would be one example of the potential impact of the social context on individual experience. The implication for practice, and research, is that social context needs to be assessed and explored as part of individual assessment to find ways to minimize distress and maximize positive coping responses.
Despite an increasing interest in the experiences of people who have been diagnosed with dementia, there is still a dearth of research into how people cope with the onset of the illness. This study uses qualitative methodology to examine the appraisals and coping processes of 20 men diagnosed with early-stage Alzheimer’s disease. Semi-structured interviews were conducted with the men and their wives. These were analysed using Interpretative Phenomenological Analysis. The men’s accounts suggested that they attempted to manage their sense of self by balancing their wish to maintain a prior sense of self against their need to reappraise and construct a new sense of self. This seemed to be an ongoing, circular process. Ways in which services can assist men in the process of managing their sense of self are explored.
While general practitioners (GPs) have a central role to play in the effective primary care response to people with dementia and their families, concern has been raised as to the adequacy with which they fulfil this role. The purpose of this study was to assess GPs' views and practices regarding dementia diagnosis and management. A secondary goal was to determine whether practitioner characteristics were associated with these views and practices. A self-administered questionnaire was given to 278 GPs at the outset of a two-hour training seminar on dementia. Results suggest that GPs perceive considerable difficulties with some aspects of their care for their patients with dementia. In general, their self-reported approach to diagnosis and management of dementia was not consistent with recommended practice. Practitioner characteristics failed to distinguish those GPs whose practice was more in line with recommended practice. GPs endorsed a range of interventions that would assist them in better meeting the needs of people with dementia. The study confirms findings of earlier studies as to the adequacy with which GPs respond to people with dementia and their families. It provides additional information as to the particular difficulties GPs face and their perceived solutions to those challenges.
Research suggests there has been a cultural change in the disclosure of diagnosis; most evidence relates to cancer and there is little knowledge of attitudes towards disclosing the diagnosis of Alzheimer's disease. A questionnaire was used to survey the current practice and attitudes of old-age psychiatrists and geriatricians in Nottingham, UK. The results of this pilot study suggest that only 40% of respondents regularly tell patients the diagnosis. Although physicians are aware of many benefits in disclosing, they have concerns regarding the certainty of diagnosis, the patient's insight, and potential detrimental effects. The advantages of disclosure and the ethical issues involved are discussed.
In 1984, questionnaires were sent to members of the International Psycho-Oncology Society concerning the practice in their country with regard to revealing the diagnosis of cancer to patients, their opinion about the effect of their policy, and their impression of local trends and attitudes toward cancer. Data from 90 respondents from 20 countries revealed that use of the word “cancer” was often avoided in discussions with the patient. Words commonly substituted for cancer were those that implied a “swelling” (e.g., tumor, growth, lump), and “inflammation,” or a pathophysiologic change (blood disease, precancerous, unclean tissue). Oncologists estimated that a low percentage ( 80%). However, in all countries, the majority of physicians tell the family the diagnosis. The majority (90%) reported a trend toward increased telling of the diagnosis, due to greater patient information and expectations, and increased physician openess in using the word cancer. Most (68%) felt that the overall effect of revealing the diagnosis was positive. While emotional distress was transiently greater when patients were told, there were positive effects concerning coping, compliance, tolerance of treatment, planning for future, communication with physicians and others, and improved prognosis. The transient negative effects were depression, anxiety, and anger. It is important to recognize that efforts to find the “correct” position about revealing or concealing cancer diagnosis must recognize that the language between doctor and patient is constrained by cultural norms. Communication is likely to be far less dependent upon the specific words used then upon the meaning that is conveyed by the doctor.
This article reviews what we should tell patients and carers about dementia. The attitudes and views of patients, carers and peer groups are examined, as is the practice of doctors and other professionals working in dementia care. Factors influencing the decision to disclose the diagnosis of dementia, including the degree of certainty of the diagnosis, the degree of insight of the patient and the severity of the dementia are considered. Advantages, disadvantages and ethical issues of disclosure are discussed, as well as when or whether and how to disclose the diagnosis. Flexible guidelines regarding the process of disclosure are introduced.
Increasing public awareness, coupled with the wider availability of drug therapies for some dementing conditions, means that carers are often informed of the diagnosis of dementia. However it is unclear how much sufferers themselves are told about their diagnoses. There are a number of fears about the possibly harmful effects of giving sufferers this information, but these may be balanced by potential benefits. The aims of this study were to investigate how many sufferers of dementia were given diagnostic information, whether their age was a factor in whether they learned this information, who told them the diagnosis, and whether carers would wish to know themselves if they had dementia (and if this related to whether the sufferer learned their diagnosis). The study also aimed to elicit carers' reasons for giving or withholding diagnostic information. A self-report questionnaire was completed by 71 carers recruited through old age psychiatry services in East Anglia. Half of the sufferers had learned their diagnosis, more from their carers than their doctors. The age of the sufferer was found to be related to whether or not doctors told them their diagnosis. This was independent of the type of dementia (Alzheimer's or Pick's disease) or the specialism of the diagnosing doctor. This study did not elucidate reasons for this age effect, which could be the result of 'agist' attitudes by doctors, younger sufferers for information. Carers' wishes regarding themselves were related to whether they gave diagnostic information to the sufferer. Only 21% of carers were given an opportunity to discuss the issues involved. Younger carers were significantly more likely to feel that such an opportunity would have been useful. Most of the carers who had informed the sufferer said that the sufferer had wanted to know, or needed a meaningful explanation for their difficulties, rather than giving more practical legal or financial reasons. Carers who had not disclosed feared that diagnostic information would cause too much distress, or that the sufferers' cognitive impairments were too great an obstacle.
Abstract Aims : To examine the effect on patients and carers of being told the diagnosis of a dementing illness such as Alzheimer's disease, to explore the perceptions of carers and, as far as possible, of patients regarding their experience of research participation, and to evaluate our own practice in relation to meeting the information needs of patients and families. Methods : Postal survey with quantitative and qualitative elements sent to the main carers of 90 patients participating in The Oxford Project to Investigate Memory and Ageing (OPTIMA). Results : Seventy-nine questionnaires were completed. Analysis of data revealed an overall positive response from patients and carers to research participation. Carers were eager for all information. Looking at brain scans was helpful in the explanation of the organic changes caused by the disease. Despite mixed reactions to the diagnosis of a dementing illness, most carers preferred to know. Conclusions : Carers indicated that patients and families can benefit from early disclosure of diagnosis. This requires early referral, sensitive and ongoing support and further research into patients' reactions.
In order to understand better how much information is shared with people who are diagnosed with dementia, a questionnaire was sent to 20 memory disorders clinics in England, Scotland and Eire. We asked if they had a policy for sharing the diagnosis, how they did this and what terminology was used, and what support services were available afterwards. Our findings are reported.
Research suggests dementia is still underdiagnosed and referral to specialists occurs late and often in crisis, despite increasing evidence that sufferers and carers want early intervention and advice. A questionnaire designed to survey attitudes to dementia was completed by 35 consultants in old age psychiatry across Scotland and a representative sample of 35 general practitioners in Glasgow. The results indicated that general practitioners' and psychiatrists' attitudes to dementia differed significantly in several aspects. The majority of general practitioners felt that they had little to offer dementia patients, that early referral was unhelpful, that easier access to long-term beds was needed and that the problem was mainly social. In contrast, the majority of consultants supported early referral and diagnosis, strongly felt help could be offered, saw dementia as having both medical and social aspects and were divided regarding ease of admission for continuing care. These differences and possible implications for the delivery of optimum care are discussed.
We wished to determine caregiver attitudes about telling patients they have Alzheimer's disease (AD). At a clinic visit, the patient, caregiver, and other family members were informed of the diagnosis of AD in a frank discussion. Caregivers accompanying patients to the Memory Disorders Clinic (MDC) were interviewed in a postvisit telephone survey 3–12 months after the truth disclosure visit. Of the 37 caregivers of a consecutive series of AD clinic patients we contacted, 35 agreed to the interview. Of those caregivers interviewed, 68.6% agreed that it had been a good idea to tell the patient the diagnosis, although 11.4% disagreed. 74.3% thought that the truth disclosure had not been too upsetting; 20% disagreed. Caregivers with more education were more likely to agree that patients should be informed. Neither the relationship of the caregiver to the patient, the patient's age, sex, education level, nor degree of dementia were predictive of the caregiver's attitude about informing the patient. Most Caregivers agreed with disclosing the diagnosis. Only a small group of patients were judged very upset after hearing the diagnosis. Even for those patients, caregivers generally felt that an honest discussion of the diagnosis had been helpful.
The epidemic of heart failure and its costs to health services continue to grow. 1 2 Despite important advances in evidence based treatments, age adjusted survival rates for chronic heart failure remain worse than for many forms of cancer. 3 4 The only cure for chronic heart failure—heart transplantation—is equivalent to providing a single lifeboat to the sinking Titanic .
Most of the usually elderly patients with heart failure therefore have short lives remaining of extremely poor quality, punctuated by frequent admissions to hospital. 5 6 They often suffer dyspnoea, pain, confusion, anxiety, and depression during their last days of life. Most of them would prefer “comfort care” and do not wish for active resuscitation. Some would even prefer death.7 The growing clamour for a better experience …
Investigation of the reaction of elderly patients to the disclosure of their diagnosis of dementia compared with depression.
Elderly patients suffering from dementia and depression were asked to complete a questionnaire about the diagnosis and other aspects of their clinical summary sent to them by post. Demographic data included age, gender, marital status and occupation; degree of dementia or depression was established by administering the mini-mental state examination and the geriatric depression scale, respectively.
Patients were consecutive attendees of outpatient clinics (old age psychiatry) located in two suburban areas near London.
Demographic data included age, gender, marital status and occupation; degree of dementia or depression was established by administering the mini-mental state examination and the geriatric depression scale, respectively.
One hundred cases were recruited, 53 with dementia and 47 with depression. Most depressed and dementia patients ( > 75%) liked the idea of reading their diagnosis but 25% of dementia cases felt upset. Within the dementia group, the majority of patients with mild or severe dementia welcomed the idea of knowing their diagnosis; and 13 (100%) of the patients with vascular dementia wished to know (compared with 68% cases with Alzheimer's disease). None felt upset, and only 39% of them felt pessimistic after reading their own clinical summary. However, among dementia patients who also happened to be depressed, a higher proportion (60%) expressed an unfavourable view towards knowing their diagnosis, but only a minority (40%) of them were actually upset. Most older married females, especially those with depression and Alzheimer's disease, felt pessimistic afterwards.
There was no significant difference between patients with dementia or depression in their wish to know their diagnosis. Patients with severe dementia, even if they felt upset, preferred to be told their diagnosis. Patients with vascular dementia tended to express a more favourable view. Copyright
In answer to a questionnaire administered in 1961, 90% of responding physicians indicated a preference for not telling a cancer patient his diagnosis. To assess attitudinal changes, the same questionnaire was submitted to 699 university-hospital medical staff. Of 264 respondents, 97% indicated a preference for telling a cancer patient his diagnosis--a complete reversal of attitude. As in 1961, clinical experience was the major policy determinant, but the 1977 population emphasized the influence of medical school and hospital training. Our respondents indicated less likelihood that they would change their present policy or be swayed by research. Clinical experience was the determining factor in shaping two opposite policies. Physicians are still basing their policies on emotion-laden personal conviction rather than the outcome of properly designed scientific studies.
This article has no abstract; the first 100 words appear below.
SHOULD patients in the early stages of Alzheimer's disease be told their diagnosis? We became interested in this subject in the course of evaluating and caring for patients with Alzheimer's disease and dealing with their care givers and families. Unlike patients with other chronic illnesses in which signs and symptoms prompt the patients to seek consultation on their own, our patients are often brought by family members who suspect the diagnosis of Alzheimer's disease. Often our evaluation is preceded by impassioned pleas from the family not to disclose our findings to the patient should this diagnosis be confirmed. Intent on . . .
Margaret A. Drickamer, M.D.
West Haven Veterans Affairs Medical Center West Haven, CT 06516
Mark S. Lachs, M.D., M.P.H.
Yale University School of Medicine New Haven, CT 06520
We are indebted to P.-M. Coste, M.Div., and Nanne Scholhamer, M.S.W., for their thoughtful insights; to Drs. Robert Levine, Leo Cooney, Ralph Horwitz, and Michelle Barry for reviewing earlier drafts; and to Laurene McDevitt for assistance in the preparation of the manuscript.
A survey of carers belonging to the Alzheimer's Disease and Related Disorders Society (ADARDS) had three aims: (i) to investigate the process of health professionals providing information to patients and carers: (ii) to determine the nature of problems burdening carers; and (iii) to examine factors associated with institutional placement. Carers reported on deficiencies in the provision of information and indicated their preferences as to how the information should be given. ADARDS, general practitioners and other health professionals were reportedly helpful, with each appearing to have a role in providing information about dementia. Multiple problem behaviours were reported by most carers, especially difficulties with communication, the need for constant supervision and disruption to personal life. Institutional care was most highly correlated with dependency problems, severity of dementia and a non-spouse carer. Implications include the need for training of doctors in communication and education about dementia with particular attention to management of dependency problems.
167 patients disabled by multiple sclerosis were interviewed to ascertain their views about being told the name of the disease causing their disability. 30 were ignorant of the nature of their disease. 83% favoured knowing the diagnosis, 13% were indifferent, and less than 4% preferred not to know the diagnosis. Almost a quarter of the patients had discovered the diagnosis for themselves. All the respondents thought that the consultant was the person who should convey the diagnosis of multiple sclerosis.
KIE
In a study initiated by the Multiple Sclerosis Society of Great Britain and Northern Ireland, 83% of a group of multiple sclerosis patients were found through interviews to believe they had a "basic right" to be told the true nature of their diagnosis. All of the patients agreed that the consultant physician, and not family members or paramedical personnel, should inform the patient. The authors comment that reasons for withholding the diagnosis center around the fear of causing depression or even suicide, and the desire to maintain hope. However, the burden of proof should be accepted by those who advocate a policy of non-disclosure.
Whether to inform patients that they have Alzheimer's disease can be a vexing issue. Two approaches to medical ethics may be used to address this issue: one takes a strong rights-oriented position; the other takes a best-outcome position. The interests that patients have in knowing relate to both schools of thought. The authors surveyed 224 adult patients who were waiting to see their physicians. The findings showed that over 90 percent of patients want to be told of the diagnosis. Reasons for wanting to be told included making plans for care, obtaining a second opinion, and settling family matters. No demographic markers could be used to predict who would not be told. Even though several patients indicated that reading a case description made them feel suicidal, reactions to not being told are generally negative. Following either ethical approach leads to the conclusion that patients ought to be told. Subjects' interests in whom else should be told were also recorded, raising questions of confidentiality.
In 1984, questionnaires were sent to members of the International Psycho-Oncology Society concerning the practice in their country with regard to revealing the diagnosis of cancer to patients, their opinion about the effect of their policy, and their impression of local trends and attitudes toward cancer. Data from 90 respondents from 20 countries revealed that use of the word "cancer" was often avoided in discussions with the patient. Words commonly substituted for cancer were those that implied a "swelling" (e.g., tumor, growth, lump), and "inflammation," or a pathophysiologic change (blood disease, precancerous, unclean tissue). Oncologists estimated that a low percentage (less than 40%) of their colleagues revealed the word cancer in Africa, France, Hungary, Italy, Japan, Panama, Portugal, and Spain. Oncologists from Austria, Denmark Finland, The Netherlands, New Zealand, Norway, Sweden, and Switzerland, estimated the percentage to be high (greater than 80%). However, in all countries, the majority of physicians tell the family the diagnosis. The majority (90%) reported a trend toward increased telling of the diagnosis, due to greater patient information and expectations, and increased physician openess in using the word cancer. Most (68%) felt that the overall effect of revealing the diagnosis was positive. While emotional distress was transiently greater when patients were told, there were positive effects concerning coping, compliance, tolerance of treatment, planning for future, communication with physicians and others, and improved prognosis. The transient negative effects were depression, anxiety, and anger. It is important to recognize that efforts to find the "correct" position about revealing or concealing cancer diagnosis must recognize that the language between doctor and patient is constrained by cultural norms. Communication is likely to be far less dependent upon the specific words used then upon the meaning that is conveyed by the doctor.
Caregivers of family members with dementia of the Alzheimer's type were surveyed for their experiences with early symptoms, obtaining a diagnosis, home care, and institutionalization. At each stage in the process of providing care there are new and different stresses that can be ameliorated by appropriate professional assistance.
The role of physicians in the long-term management of patients with the primary diagnosis of progressive dementia was investigated by surveying the opinions of 57 physicians and 47 family members. Respondents were asked to evaluate the difficulty and helpfulness of various activities physicians perform in the diagnosis, treatment, and management of patients with dementia. Both physicians and families rated the diagnostic services provided by physicians very highly. Although families found physicians' explanations of the diagnosis and prognosis extremely helpful, physicians reported this as an area of difficulty. Physicians and families expressed considerable frustration with the limited medical treatments and interventions for the relief of symptoms associated with dementia. Despite the acknowledged sensitivity of physicians to the social-psychological consequences of dementia, physicians were found to be least helpful in addressing these issues, either directly or through referral to allied health and social services. This study outlines areas of physician education that need improvement and calls for development of an interdisciplinary network of services for the biopsychosocial management of dementia.
To find out what difficulties general practitioners (GPs) experience with diagnosing and managing dementia.
Postal questionnaire to a random stratified sample of one in seven active Australian GPs (2182 of 14,932).
1473 GPs (67.5%) responded to the questionnaire. The results indicated reasonable knowledge about diagnostic features of dementia and good insight into common issues facing family carers. Even so, GPs had difficulties with diagnosis and management of dementia and wanted assessment protocols and educational programs. A minority of GPs regularly screened elderly patients for cognitive impairment but the majority relied on passive means of diagnosing dementia. Although generally positive about Aged Care Assessment Teams (ACATs) and Aged Care Community Services (ACCS), GPs expressed some concerns about these services.
Recommendations arising from the survey were: development of an assessment protocol and a screening instrument, regular cognitive check-ups for patients over 75 years, educational programs, improved coordination with Aged Care Assessment Teams and Community Services, inventories and registers of local community services and residential facilities, and appropriate Medicare rebates.
Controversy exists as to whether Alzheimer's disease (AD) patients should be told their diagnosis, yet no research has been done examining older patients' attitudes on this topic. This study examines patient's attitudes toward this topic.
A prospective, community-based study. Participants read vignettes of two patients, one with AD and one with terminal cancer, and then answered questions regarding their attitudes toward these illnesses.
A community-based retirement community in Charlottesville, Virginia.
One hundred fifty-six community-dwelling older persons (mean age 79.7 +/- 6.9 years).
A structured questionnaire disclosed demographic data (age, sex, race, religion, marital status), personal experience with cancer and AD, and opinions about being told the diagnosis of these diseases.
Most participants (n = 124, 79.5%) responded that they would prefer to know if they had AD, but the number was significantly fewer (Fischer exact test, P < .001) than those who would want to know if they had terminal cancer (n = 143, 91.7%) Interestingly, significantly fewer married subjects would want their spouse to know if the spouse had either illness. Only 65.7% (n = 69) of subjects would want their spouse to know if the spouse had AD (Fisher exact test, P = .008), whereas for cancer, 80.2% (n = 77) would want their spouse to know if the spouse had cancer (Fisher exact test P < .001). No demographic variables distinguished subjects who did from those who did not want to know the diagnosis for themselves or their spouses for either AD or cancer. Among the reasons some subjects gave for wanting to know of the diagnosis of AD was being able to consider suicide.
Although these results may support disclosure of diagnosis for most patients with AD, clinical and ethical issues remain in individual cases.
To examine attitudes of spouse caregivers about the process of obtaining a diagnosis of a dementing illness, including perceived benefits and obstacles to obtaining a diagnosis and suggestions for improving the process.
A mail survey of spouse caregivers of dementia patients followed by the Michigan Alzheimer's Disease Research Center.
The 233 spouse caregivers of dementia patients who returned a completed questionnaire.
More than three-fourths of the sample rated the following benefits of obtaining a diagnosis as very or extremely important: ruling out other causes of memory or behavior problems, allowing family members to get information about dementia, may qualify my spouse for drug treatment, and will allow me to plan for the future. Primary obstacles included the time required to obtain a diagnosis, the cost of procedures, lack of access to physicians trained to diagnose dementing illnesses, and not receiving a referral from a primary care physician (41.6%, 41.0%, 40.8%, and 24.1% of the sample, respectively, agreed or strongly agreed that the factor posed a barrier to obtaining a diagnosis). Content analysis of responses to two open-ended questions identified problematic or stressful aspects of obtaining a diagnosis and suggestions for making the process easier for the patient and family.
Results suggest the need to provide an orientation to the diagnosis and assessment process for patients and family members, develop a training session for physicians to better prepare them to address the emotional needs of patients and families and to disclose the diagnosis in an informative and compassionate manner, and provide outreach education to primary care physicians to increase knowledge and awareness of dementing illnesses and to increase referrals to community-based services and health professionals able to address the concerns of family members.
Presenile dementia of alzheimer type is a rare condition, and a report drawn from a large population may be useful to general practitioners.
A study was undertaken in the Northern Regional Health Authority area to investigate general practitioner referral practice, hospital investigations and diagnosis in cases of presenile alzheimers disease.
Reviews of 186 sets of case notes of patients diagnosed between 1985 and 1989, and follow-up interviews with the principal carer in a subsample of 73 surviving patients were undertaken.
In 63% of cases, formal diagnosis of presenile alzheimers disease was made by a neurologist, in 27% of cases by a psychiatrist and in 9% by a physician. Symptoms of depression had been noted in 45 patients (24%) and 21 had been prescribed antidepressant drugs prior to specialist referral. Computerized tomography scans were requested significantly more frequently by neurologists than other specialists and lumbar puncture was virtually only done by neurologists, but there were no significant differences between specialists regarding other clinical investigations. Domiciliary care or day centre attendance were more likely to be arranged at hospital discharge by psychiatrists than other specialists, but at follow-up interview no differences in community care provision were found according to initial specialty. Interviews with relatives of surviving patients revealed that at initial contact with general practitioners 48% of patients were unaware that they had any problem. Only 13 relatives (18%) felt they had been given sufficient information at diagnosis concerning the chronic and progressive nature of the disease, and at follow up 26% remained unaware of the existence of the Alzheimer's Disease Society.
These results reinforce the importance of the role of general practitioners in arranging and coordinating appropriate support for patients and their relatives, in providing continuity of care and in advising the families of the existence of voluntary organizations.
An extraordinary thing about the medical profession is that it managed to avoid telling the truth to patients for so many centuries. In 1672 the French physician Samuel de Sorbiere considered the idea but thought that it might seriously jeopardise medical practice and concluded that it would not catch on.1 This approach—recognising the need to act but finding excuses not to—is still in evidence today, even though there has been a considerable change over the past 35 years. Two papers in this week's journal remind us that what is comfortable for clinicians is not necessarily what patients want.
In 1961, a landmark paper by Oken showed that 90% of surgeons in the United States would not routinely discuss a diagnosis of cancer with their patients.2 However, several studies subsequently showed that a growing proportion of cancer patients wanted to know their diagnosis. The proportion of patients wanting to know has varied in different studies, depending on the locale and the sample (Northouse has done an excellent overview3, but has often been in excess of 90%.
Medical practice has gradually changed to meet patients' needs, particularly in the United States, and nearly 20 years after the Oken study, …
Last year Conor et al reported that 83% of family members accompanying patients with Alzheimer's disease to a memory clinic did not want the patients informed of the diagnosis, despite 71% of relatives stating that they would want to be told themselves.1 This finding has stimulated controversy on how doctors should manage this diagnostic information.
In a letter in this week's BMJ , Barnes reports that 57% of first degree relatives in his smaller sample wished their relatives to be informed (p 375).2 Another letter, from Rice et al (p 376), reports a relation between severity of dementia and the self reported behaviour of consultants in the psychiatry of old age: over 80% of psychiatrists responding to a questionnaire stated that they rarely informed severely demented patients. In contrast, they reported nearly always sharing diagnostic information with patients with mild dementia.3 4 Another 40% reported sometimes telling their mildly affected patients. Not surprisingly, practice regarding informing “carers” differed in the opposite direction, with the relatives of more severely affected patients being more …
Multiple sclerosis is a chronic neurologic disease that follows a variable and uncertain course and has a profound effect on every aspect of the lives of patients and their families. Many ethical problems arise for patients, families, and caregivers. These include when and how to tell the patient the diagnosis, decisions about having children, various aspects of medical management and drug trials, concerns regarding quality of life, the effects and consequences of cognitive and psychologic impairment, and end-of-life issues. Ethical issues may also arise for the patient in relation to work and environment and to the impact of the disease on the family. This article is intended to prepare the physician who treats patients with multiple sclerosis to address these various problems.
A questionnaire was sent to all general practitioners (GPs) in Cambridgeshire asking them about their practice in telling patients with dementia or terminal cancer their diagnosis. Although the majority of GPs would always or often tell patients of a diagnosis of terminal cancer, this was not the case in dementia; uncertainty of diagnosis was cited as the most important factor in not giving the diagnosis. The implications of these findings are discussed in the light of the GP's role in dementia and the development of new anti-Alzheimer's drugs.
The main purpose of this study was to understand the part played by clinical diagnosis in relation to persons with suspected dementia. Interviews were held with eight persons who had been evaluated clinically because of suspected dementia. A phenomenological-hermeneutic analysis inspired by Ricoeur's philosophy was performed. The findings revealed the overall meaning of "making sense" of early experiences of memory loss in terms of a clinical diagnosis by which participants are provided with a means of interpreting and ascribing some meanings to the changes in themselves. When a meaning cannot be established and the future is unknown, these experiences are found to pose an existential threat that projects into future existence. The study suggests that understanding how an informed diagnosis is comprehended by the client becomes essential when evaluating persons due to suspected dementia.