"There has to be more caring": patient and care partner experiences of the disclosure of amyloid-ß PET scan results.

OBJECTIVES: To explore patient and care partner experiences of receiving an amyloid scan result, with a focus on how clinician disclosure practices influenced patient and care partner emotional responses to the scan result and/or diagnosis. METHODS: Semi-structured interviews with 38 people with mild cognitive impairment or dementia and 62 care partners who experienced the disclosure of results from an amyloid PET scan as part of the CARE-IDEAS study. We used thematic analysis to analyze interview transcripts. RESULTS: We identified four aspects of the disclosure process that could influence patient and care partner emotional experiences of the scan result/diagnosis: (1) mode of delivery, (2) presence of a care partner, (3) clarity of the scan result explanation, and (4) discussion of post-scan treatment and support options. CONCLUSIONS: Emotional experiences of an amyloid scan result can vary depending on how results are communicated. These findings support previous efforts to develop standard disclosure protocols. Scan results should be delivered in person with the care partner present. Clinicians should give a clear explanation of the result and its implications in an empathetic manner. Options for treatment and support should be discussed for all patients.

Persons with cognitive impairment and care partner motivations and experiences of undergoing an amyloid scan: a systematic review of qualitative studies.

BACKGROUND AND OBJECTIVES: Amyloid positron emission tomography (PET) scans can enhance the accuracy of dementia diagnoses. However, the perspectives and experiences of people with cognitive impairment and their care partners undergoing an amyloid scan are less well understood. Therefore, this review aimed to identify and summarize qualitative studies exploring patient and care partner experiences of undergoing an amyloid scan. RESEARCH DESIGN AND METHODS: We searched Embase, MEDLINE, and PsychInfo in March 2024. Articles were screened for inclusion by two reviewers and critically appraised using the Joanna Briggs Institute Critical Appraisal Tool for Qualitative Studies. Data from the included studies were synthesized using thematic synthesis. RESULTS: We identified ten papers from six studies. We identified four themes: 1) motivations for undergoing an amyloid scan, 2) experiences of receiving the result, 3) emotional responses to the result, and 4) actions in light of the scan result. Participants reported undergoing the scan to determine the cause of cognitive impairment. They described the information gained from the scan as helpful but struggled to recall the correct terminology or implications of the scan. Emotional responses to the scan varied depending on the scan result. In light of the scan result, the most common action was making advanced plans; however; this was mainly discussed among participants with elevated amyloid. DISCUSSIONS AND IMPLICATIONS: Amyloid scans can provide useful and actionable information. However, learning the scan result could be distressing. Future research is needed to balance the potential benefits and harms of amyloid scans.

Beta amyloid PET scans for dementia diagnoses: Practice and research implications from CARE-IDEAS.

Beta amyloid PET scans are a minimally invasive biomarker that may inform Alzheimer's disease (AD) diagnosis. The Caregiver's Reactions and Experience (CARE) study, an IDEAS supplement, aimed to understand experiences of PET scan recipients and their care partners regarding motivations for scans, reporting and interpreting results, and impact of results. Patients with mild cognitive impairment or dementia who agreed to join the CARE-IDEAS study and their care partners participated in a baseline survey and follow-up survey approximately 18 months later, supplemented by in-depth qualitative interviews with subsets of participants. Patients who received scans and volunteered for follow-up research were more likely to be male, better educated, and have higher income than the general population. Survey information was merged with Medicare data. This article integrates findings from several CARE-IDEAS publications and provides implications for practice and research. Although most participants accurately reported scan results, they were often confused about their meaning for prognosis. Some participants reported distress with results, but there were no significant changes in measured depression, burden, or economic strain over time. Many respondents desired more information about prognosis and supportive resources. Scan results were not differentially associated with changes in service use over time. Findings suggest a need for carefully designed and tested tools for clinicians to discuss risks and benefits of scans and their results, and resources to support patients and care partners in subsequent planning. Learning of scan results provides a point-of-contact that should be leveraged to facilitate shared decision-making and person-centered longitudinal AD care.

A qualitative study of informal caregiver perceptions of the benefits of an early dementia diagnosis.

BACKGROUND: Current and former dementia policies in the United Kingdom (UK) recommend diagnosing dementia early, or as close to the onset of symptoms as possible. Informal caregivers play an important role in initiating the diagnostic process and providing support to people living with dementia. Therefore, this study aimed to explore caregiver perceptions of the benefits of an early diagnosis. METHODS: We conducted semi-structured interviews with 12 current and former informal caregivers to people with dementia in the UK in 2020. We analysed the interviews using thematic analysis. RESULTS: Benefits of an early diagnosis included: (1) protecting the person with dementia from financial or physical harm, (2) timely decision-making, and (3) access to services and treatments following a diagnosis. We identified three conditions necessary for the benefits of an early diagnosis to be felt: (1) adequate prognostic information, (2) someone to advocate on behalf of the person with dementia, and (3) a willingness to seek and accept the diagnosis. CONCLUSIONS: In this study, we identified how diagnosing dementia close to the onset of symptoms could be beneficial and the conditions necessary for these benefits to be felt. The findings highlight the importance of an early diagnosis for enabling people with dementia and caregivers to make practical arrangements and to access services. Further research is needed to build on the findings of this study by exploring the perspectives of people with dementia and by including a larger, more diverse sample of caregivers.

Elevated Amyloid-ß PET Scan and Cognitive and Functional Decline in Mild Cognitive Impairment and Dementia of Uncertain Etiology.

BACKGROUND: Elevated amyloid-ß (Aß) on positron emission tomography (PET) scan is used to aid diagnosis of Alzheimer's disease (AD), but many prior studies have focused on patients with a typical AD phenotype such as amnestic mild cognitive impairment (MCI). Little is known about whether elevated Aß on PET scan predicts rate of cognitive and functional decline among those with MCI or dementia that is clinically less typical of early AD, thus leading to etiologic uncertainty. OBJECTIVE: We aimed to investigate whether elevated Aß on PET scan predicts cognitive and functional decline over an 18-month period in those with MCI or dementia of uncertain etiology. METHODS: In 1,028 individuals with MCI or dementia of uncertain etiology, we evaluated the association between elevated Aß on PET scan and change on a telephone cognitive status measure administered to the participant and change in everyday function as reported by their care partner. RESULTS: Individuals with either MCI or dementia and elevated Aß (66.6% of the sample) showed greater cognitive decline compared to those without elevated Aß on PET scan, whose cognition was relatively stable over 18 months. Those with either MCI or dementia and elevated Aß were also reported to have greater functional decline compared to those without elevated Aß, even though the latter group showed significant care partner-reported functional decline over time. CONCLUSIONS: Elevated Aß on PET scan can be helpful in predicting rates of both cognitive and functional decline, even among cognitively impaired individuals with atypical presentations of AD.

Psychosocial and Behavioral Outcomes for Persons With Cognitive Impairment and Caregivers Following Amyloid-ß PET Scan Disclosure: A Systematic Review.

BACKGROUND: Positron emission tomography (PET) scans for amyloid-ß can aid in the early and accurate detection of Alzheimer disease. The results of amyloid PET scans could help people with cognitive impairment and caregivers better understand their diagnosis; however, there are concerns that they could also cause psychological harm. METHODS: A systematic review of psychosocial and behavioral quantitative outcomes following the disclosure of an amyloid PET scan for persons living with cognitive impairment (subjective cognitive decline, mild cognitive impairment, Alzheimer's Disease, and other dementias) and caregivers. FINDINGS: Ten papers were identified from 7 studies. There was little evidence of an association between disclosure and depression. However, persons with mild cognitive impairment and their caregivers with elevated levels of amyloid had an increased risk of distress or anxiety compared with those without elevated amyloid. Participants correctly recalled the scan results; however, it is unclear whether this led to an increased understanding of their diagnosis. We did not identify any studies measuring behavioral outcomes. CONCLUSIONS: We found mixed evidence on the relationship between amyloid scans and psychosocial and behavioral outcomes in people with cognitive impairment and caregivers. These findings highlight the need for more methodologically rigorous research on this topic.

Non-pharmacological interventions for the prevention of sexually transmitted infections (STIs) in older adults: A systematic review.

BACKGROUND: STIs in older adults (adults aged 50 years and older) are on the rise due to variable levels of sex literacy and misperceived susceptibility to infections, among other factors. We systematically reviewed evidence on the effect of non-pharmacological interventions for the primary prevention of sexually transmitted infections (STIs) and high-risk sexual behaviour in older adults. METHODS: We searched EMBASE, MEDLINE, PSYCINFO, Global Health and the Cochrane Library from inception until March 9th, 2022. We included RCTs, cluster-randomised trials, quasi-RCTs, interrupted time series (ITS) and controlled and uncontrolled before-and-after studies of non-pharmacological primary prevention interventions (e.g. educational and behaviour change interventions) in older adults, reporting either qualitative or quantitative findings. At least two review authors independently assessed the eligibility of articles and extracted data on main characteristics, risk of bias and study findings. Narrative synthesis was performed. RESULTS: Ten studies (two RCTs, seven quasi-experiment studies and one qualitative study) were found to be eligible for this review. These interventions were mainly information, education and communication activities (IECs) aimed at fostering participants' knowledge on STIs and safer sex, mostly focused on HIV. Most studies used self-reported outcomes measuring knowledge and behaviour change related to HIV, STIs and safer sex. Studies generally reported an increase in STI/HIV knowledge. However, risk of bias was high or critical across all studies. CONCLUSIONS: Literature on non-pharmacological interventions for older adults is sparse, particularly outside the US and for STIs other than HIV. There is evidence that IECs may improve short-term knowledge about STIs however, it is not clear this translates into long-term improvement or behaviour change as all studies included in this review had follow-up times of 3 months or less. More robust and higher-quality studies are needed in order to confirm the effectiveness of non-pharmacological primary prevention interventions for reducing STIs in the older adult population.

Prevalence and incidence of depressive symptoms and diagnosis of depression as associated with elevated amyloid among Medicare beneficiaries with cognitive impairment.

BACKGROUND: Depression and cognitive impairment commonly co-occur, and it has been hypothesized that the two share pathological processes. Our objective for this study was to determine the relationship between elevated ß-amyloid level and the prevalence and incidence of depressive symptoms and diagnosed depression over two years among fee-for-service Medicare beneficiaries with cognitive impairment. METHODS: We utilized data from the CARE-IDEAS cohort study (N = 2078) including two measures of depressive symptoms (PHQ-2) and administrative claims data to identify pre-scan and incident depression diagnosis in subsample of fee-for-service Medicare beneficiaries (N = 1443). We used descriptive statistics and Poisson regression models with robust covariance. RESULTS: Beneficiaries whose scan results indicated not-elevated ß-amyloid were significantly more likely to have been diagnosed with depression pre-scan (46.4 % vs. 33.1 %). There was no significant association between elevated amyloid and the incidence of depressive symptoms or diagnosed depression. LIMITATIONS: The sample was limited to Medicare beneficiaries with cognitive impairment. Race/ethnic composition and education levels were not representative of the general population and there was substantial loss to follow-up. Mixed depressive / anxious episodes were captured as diagnoses of depression, potentially overestimating depression in this population. CONCLUSIONS: There was a high prevalence and incidence of diagnosed depression in this cohort of Medicare beneficiaries, but the incidence of depressive symptoms and diagnosed depression was not associated with elevated ß-amyloid.

"I know that my role is going to change": a mixed-methods study of the relationship between amyloid-ß PET scan results and caregiver burden.

BACKGROUND: Caregiver burden consists of disease specific and perceived stressors, respectively referred to as objective and subjective indicators of burden, and is associated with negative outcomes. Previous research has found that care partners to persons living with cognitive impairment and elevated levels of amyloid-ß, as measured by a positron emission tomography (PET) scan, may experience caregiver burden. AIMS: To elucidate the relationship between amyloid scan results and subjective and objective indicators of burden. METHODS: A parallel mixed-methods design using survey data from 1338 care partners to persons with mild cognitive impairment (MCI) and dementia who received an amyloid scan from the CARE-IDEAS study; and semi-structured interviews with a subsample of 62 care partners. Logistic regression models were used to investigate objective factors associated with caregiver burden. A thematic analysis of semi-structured interviews was used to investigate subjective indicators by exploring care partners' perceptions of their role following an amyloid scan. RESULTS: Elevated amyloid was not associated with burden. However, the scan result influenced participants perceptions of their caregiving role and coping strategies. Care partners to persons with elevated amyloid expected increasing responsibility, whereas partners to persons without elevated amyloid and mild cognitive impairment did not anticipate changes to their role. Care partners to persons with elevated amyloid reported using knowledge gained from the scan to develop coping strategies. All care partners described needing practical and emotional support. CONCLUSIONS: Amyloid scans can influence subjective indicators of burden and present the opportunity to identify and address care partners' support needs.

Advance directives among cognitively impaired persons who had an amyloid PET scan and their care partners: a mixed-methods study.

BACKGROUND: Little research exists on the role of ß-amyloid PET scans as part of Alzheimer's diagnostic tests and documentation of end-of-life preferences for persons with cognitive impairment. The study objectives were to examine the association of amyloid PET scan results (elevated vs. not elevated amyloid levels) and diagnostic category (mild cognitive impairment vs. dementia) with the likelihood of having an advance directive (reported a median of 4.5 months post-scan); to explore perceptions of PET scan results and their influence on planning for the future among persons with cognitive impairment and their care partners. METHODS: Sequential, explanatory mixed-methods design using data from dyads in the CARE-IDEAS study: advance directives as a factor of diagnostic category and scan result using multivariable logistic regression models; thematic analysis of semi-structured interviews with persons with cognitive impairment and care partners to explore how scan results influenced documentation of future healthcare preferences. Participants included 1784 persons with cognitive impairment and care partners from the CARE-IDEAS study, and a subsample of 100 semi-structured telephone interviews. RESULTS: 81.6% of dyads reported an advance directive. Non-Hispanic, White participants had higher rates of advance directives. There was no significant association between having an advance directive and scan results. Qualitative analysis provided insight into perceived urgency to have advance directives, evolving healthcare preferences, and the context of completing advance directives. CONCLUSIONS: Although amyloid PET scans prompted persons with cognitive impairment and care partners to consider progressive cognitive impairment as part of evolving healthcare preferences, we found substantial variability in the perceived urgency of documentation.

Differences in survival and mortality in minority ethnic groups with dementia: A systematic review and meta-analysis.

OBJECTIVES: Although there are disparities in both risk of developing dementia and accessibility of dementia services for certain minority ethnic groups in the United States and United Kingdom, disparities in survival after a dementia diagnosis are less well-studied. Our objective was to systematically review the literature to investigate racial/ethnic differences in survival and mortality in dementia. METHODS: We searched Embase, Ovid MEDLINE, Global Health and PsycINFO from inception to November 2018 for studies comparing survival or mortality over time in at least two race/ethnicity groups. Studies from any country were included but analysed separately. We used narrative synthesis and random-effects meta-analysis to synthesise findings. The Newcastle-Ottawa Scale was used to assess quality and risk of bias in individual studies. RESULTS: We identified 22 articles, most from the United States (n = 17), as well as the United Kingdom (n = 3) and the Netherlands (n = 1). In a meta-analysis of US studies, hazard of mortality was lower in Black/African American groups (Pooled Hazard Ratio = 0.86, 95% CI = 0.82-0.91, I2  = 17%, from four studies) and Hispanic/Latino groups (Pooled HR = 0.65, 95% CI = 0.50-0.84, I2  = 86%, from four studies) versus comparison groups. However, study quality was mixed, and in particular, quality of reporting of race/ethnicity was inconsistent. CONCLUSION: Literature indicates that Black/African American and Hispanic/Latino groups may experience lower mortality in dementia versus comparison groups in the United States, but further research, using clearer and more and consistent reporting of race/ethnicity, is necessary to understand what drives these patterns and their implications for policy and practice.

The association between an early diagnosis of dementia and secondary health service use.

BACKGROUND: dementia policy suggests diagnosing dementia early can reduce the risk of potentially harmful hospital admissions or emergency department (ED) attendances; however, there is little evidence to support this. A diagnosis of mild cognitive impairment (MCI) before dementia is a helpful proxy to explore early diagnosis. This study investigated the association between an early diagnosis of dementia and subsequent hospitalisations and ED attendances. METHOD: a retrospective cohort study of electronic health care records from 15,836 patients from a large secondary care database in South London, UK. Participants were divided into two groups: those with a diagnosis of MCI before dementia, an early diagnosis, and those without. Cox regression models were used to compare the risk of hospitalisation and ED attendance after dementia diagnosis and negative binomial regression models were used to compare the average length of stay and average number of ED attendances. RESULTS: participants with an early diagnosis were more likely to attend ED after their diagnosis of dementia (HR = 1.09, CI = 1.00-1.18); however, there was no difference in the number of ED attendances (IRR = 1.04, CI = 0.95-1.13). There was no difference in the risk of hospitalisation (HR = 0.99, CI = 0.91-1.08) or length of stay between the groups (IRR = 0.97, CI = 0.85-1.12). CONCLUSION: the findings of this study do not support the assumption that an early diagnosis reduces the risk of hospitalisation or ED attendance. The patterns of health service use in this paper could reflect help-seeking behaviour before diagnosis or levels of co-morbidity.

The Association Between a Previous Diagnosis of Mild Cognitive Impairment as a Proxy for an Early Diagnosis of Dementia and Mortality: A Study of Secondary Care Electronic Health Records.

BACKGROUND: Dementia policy states that the early diagnosis of dementia can keep people living well for longer; however, there is little robust evidence to support this. Mild cognitive impairment (MCI) is considered a prodrome to dementia and can aid with the earlier diagnosis of dementia. OBJECTIVE: The objective of this study was to use a previous diagnosis of MCI, before dementia, as a proxy for early diagnosis to investigate the relationship between an early diagnosis and mortality. METHODS: A retrospective cohort study of electronic health care records from South London and Maudsley NHS. Patients aged 50+, diagnosed with dementia between January 2008 and November 2018, were divided into two groups: those with a previous diagnosis of MCI (early diagnosis) and those without. Cox regression models used to compare the risk of mortality between groups. RESULTS: Of 18,557 participants, 5.6%(n = 1,030) had an early diagnosis; they had fewer cognitive, psychiatric, and functional problems at dementia diagnosis. The early diagnosis group had a reduced hazard of mortality (HR = 0.86, CI = 0.77-0.97). However, the magnitude of this effect depended on the scale used to adjust for cognitive difficulties. CONCLUSION: A previous diagnosis of MCI is a helpful proxy for early diagnosis. There is some evidence that an early diagnosis is associated with a reduced risk of mortality; however, it is not clear how Mini-Mental State Exam scores affect this relationship. While these findings are promising, we cannot be conclusive on the relationship between an early diagnosis and mortality.

Access to Health Services in Older Minority Ethnic Groups with Dementia: A Systematic Review.

BACKGROUND/OBJECTIVES: While it is acknowledged that minority ethnic (ME) groups across international settings face barriers to accessing care for dementia, it is not clear whether ME groups access services less frequently as a result. The objective of this review is to examine whether ME groups have longer delays before accessing dementia/memory services, higher use of acute care and crisis services and lower use of routine care services based on existing literature. We also examined whether ME groups had higher dementia severity or lower cognition when presenting to memory services. DESIGN: Systematic review with narrative synthesis. SETTING: Nonresidential medical, psychiatric, memory, and emergency services. PARTICIPANTS: Twenty studies totaling 94,431 older adults with dementia or mild cognitive impairment. MEASUREMENTS: We searched Embase, Ovid MEDLINE, Global Health, and PsycINFO from inception to November 2018 for peer-reviewed observational studies which quantified ethnic minority differences in nonresidential health service use in people with dementia. Narrative synthesis was used to analyze findings. RESULTS: Twenty studies were included, mostly from the U.S. (n = 13), as well as the UK (n = 4), Australia (n = 1), Belgium (n = 1), and the Netherlands (n = 1). There was little evidence that ME groups in any country accessed routine care at different rates than comparison groups, although studies may have been underpowered. There was strong evidence that African American/Black groups had higher use of hospital inpatient services versus U.S. comparison groups. Primary care and emergency services were less well studied. Study quality was mixed, and there was a large amount of variability in the way ethnicity and service use outcomes were ascertained and defined. CONCLUSION: There is evidence that some ME groups, such as Black/African American groups in the U.S., may use more acute care services than comparison populations, but less evidence for differences in routine care use. Research is sparse, especially outside the U.S.

Outcomes tested in non-pharmacological interventions in mild cognitive impairment and mild dementia: a scoping review.

OBJECTIVES: Non-pharmacological treatments are an important aspect of dementia care. A wide range of interventions have been trialled for mild dementia and mild cognitive impairment (MCI). However, the variety of outcome measures used in these trials makes it difficult to make meaningful comparisons. The objective of this study is to map trends in which outcome measures are used in trials of non-pharmacological treatments in MCI and mild dementia. DESIGN: Scoping review. DATA SOURCES: EMBASE, PsychINFO, Medline and the Cochrane Register of Controlled Trials were searched from inception until February 2018. An additional search was conducted in April 2019 ELIGIBILITY: We included randomised controlled trials (RCTs) testing non-pharmacological interventions for people diagnosed with MCI or mild dementia. Studies were restricted to full RCTs; observational, feasibility and pilot studies were not included. CHARTING METHODS: All outcome measures used by included studies were extracted and grouped thematically. Trends in the types of outcome measures used were explored by type of intervention, country and year of publication. RESULTS: 91 studies were included in this review. We extracted 358 individual outcome measures, of which 78 (22%) were used more than once. Cognitive measures were the most frequently used, with the Mini-Mental State Examination being the most popular. CONCLUSIONS: Our findings highlight an inconsistency in the use of outcome measures. Cognition has been prioritised over other domains, despite previous research highlighting the importance of quality of life and caregiver measures. To ensure a robust evidence base, more research is needed to highlight which outcome measures should be used over others. PROSPERO REGISTRATION NUMBER: CRD42018102649.

People with intellectual disabilities at the end of their lives: The case for specialist care?

BACKGROUND: People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end-of-life care. This study aimed to explore a specialist intellectual disability service for older people who are dying and how it related to their quality of life and to costs associated with care provided. METHOD: Data were collected for nine residents and 15 staff members of the specialist service. A single case study design with mixed methods including observations, interviews, standardized questionnaires and costs analysis was utilized. RESULTS: We found positive results regarding overall quality of life, although individuals had limited social networks. Placement fees paid by local health trusts and social services departments were slightly higher than the estimated cost of care reflecting good financial management by a small voluntary sector organization. CONCLUSION: Whilst the philosophical arguments around "specialist" care persist, this service fills a gap in intellectual disability care provision.