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Despite three decades of research, gaps remain in meeting the needs of people with dementia and their family/friend carers as they navigate the often-tumultuous process of driving cessation. This paper describes the process of using a knowledge-to-action (KTA) approach to develop an educational web-based resource (i.e. toolkit), called the Driving and Dementia Roadmap (DDR), aimed at addressing some of these gaps.
Design:
Aligned with the KTA framework, knowledge creation and action cycle activities informed the development of the DDR. These activities included systematic reviews; meta-synthesis of qualitative studies; interviews and focus groups with key stakeholders; development of a Driving and Dementia Intervention Framework (DD-IF); and a review and curation of publicly available resources and tools. An Advisory Group comprised of people with dementia and family carers provided ongoing feedback on the DDR’s content and design.
Results:
The DDR is a multi-component online toolkit that contains separate portals for current and former drivers with dementia and their family/friend carers. Based on the DD-IF, various topics of driving cessation are presented to accommodate users’ diverse stages and needs in their experiences of decision-making and transitioning to non-driving.
Conclusion:
Guided by the KTA framework that involved a systematic and iterative process of knowledge creation and translation, the resulting person-centered, individualized and flexible DDR can bring much-needed support to help people with dementia and their families maintain their mobility, community access, and social and emotional wellbeing during and post-driving cessation.
The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE (Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life Under Physical Distancing on People with Dementia and Carers) component of the IDEAL (Improving the Experience of Dementia and Enhancing Active Life) cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic within the context of the ‘post-vaccine’ period and the national lockdowns in England and Wales; and to determine perceived challenges to and facilitators of ‘living well’ during the COVID-19 pandemic and beyond as restrictions were eased. In addition, the study findings are considered in relation to understandings of identity in dementia which the broader accounts of living through the pandemic have highlighted. Seven people with mild-to-moderate dementia were interviewed and themes were derived using framework analysis. Themes suggest interviewees' stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world. Interviewees managed threats to social identity by striving to maintain social and emotional connections, where the importance of a shared, social identity, particularly for people with young-onset dementia, was also apparent. Unlike in previous studies during the pandemic, the relevance of occupation for identity was observed, where maintaining previous or new activities or occupations was important to facilitate identity as well as to keep a sense of purpose. Therefore, as well as supporting people with dementia as the pandemic eases, future research into occupation and identity in dementia is of potential value.
To compare longitudinal verbal fluency performance among Latinx Spanish speakers who develop Alzheimer’s disease to those who do not develop dementia in absolute number of words produced on each task and their ratio to combine both scores.
Method:
Participants included 833 Latinx Spanish-speaking older adults from a community-based prospective cohort in Manhattan. We performed growth curve modeling to investigate the trajectories of letter and semantic fluency, and their ratio (i.e., ‘semantic index’), between individuals who developed Alzheimer’s disease and those who did not (i.e., controls). The semantic index quantifies the proportion of words generated for semantic fluency in relation to the total verbal fluency performance.
Results:
Letter fluency performance did not decline in controls; we observed a linear decline in those who developed Alzheimer’s disease. Semantic fluency declined in both groups and showed an increased rate of change over time in the incident Alzheimer’s disease group; in comparison, the control group had a linear and slower decline. There were no group differences in the longitudinal trajectory (intercept and slope) of the semantic index.
Conclusion:
A decline in letter fluency and a more rapid and accelerating decline over time in semantic fluency distinguished people who developed Alzheimer’s disease from controls. Using the semantic index was not a superior marker of incident Alzheimer’s disease compared to examining the two fluency scores individually. Results suggest the differential decline in verbal fluency tasks, when evaluated appropriately, may be useful for early identification of Alzheimer’s disease in Latinx Spanish speakers, a historically understudied population.
Depression in dementia is common, disabling and causes significant distress to patients and carers. Despite widespread use of antidepressants for depression in dementia, there is no evidence of therapeutic efficacy, and their use is potentially harmful in this patient group. Depression in dementia has poor outcomes and effective treatments are urgently needed. Understanding why antidepressants are ineffective in depression in dementia could provide insight into their mechanism of action and aid identification of new therapeutic targets. In this review we discuss why depression in dementia may be a distinct entity, current theories of how antidepressants work and how these mechanisms of action may be affected by disease processes in dementia. We also consider why clinicians continue to prescribe antidepressants in dementia, and novel approaches to understand and identify effective treatments for patients living with depression and dementia.
Individuals living in residential aged care facilities with cognitive decline are at risk of social isolation and decreased wellbeing. These risks may be exacerbated by decline in communication skills. There is growing awareness that group singing may improve sense of wellbeing for individuals with dementia. However, to date few studies have examined broader rehabilitative effects on skills such as communication of individuals with dementia.
Aims:
To determine the feasibility and acceptability of the MuSic to Connect (MuSiCON) choir and language/communication assessment protocol in people with cognitive impairment living in non-high-care wards of a residential facility.
Methods:
Six individuals with mild-moderate cognitive impairment participated (age range 55–91 years, five female, one male). A mixed method approach was used. Quantitative outcomes included attendance rates, quality of life and communication measures. The qualitative measure was a brief survey of experience completed by participants and carers post-intervention.
Results:
Overall, MuSiCON was perceived as positive and beneficial, with high attendance, perception of improved daily functioning and high therapeutic benefit without harmful effects. While there was no reliable change in communication skills over the course of the six-week intervention, most participants successfully engaged in the conversational task, suggesting it is a suitable and ecologically valid method for data collection
Conclusions:
The MuSiCON protocol demonstrated feasibility and was well received by participants and staff at the residential facility. A co-design approach is recommended to improve upon feasibility, acceptability and validity of the assessment protocol prior to Phase II testing.
Cancer has been associated with lower risk of dementia, although methodological issues raise concerns about the validity of this association. We recruited 31,080 men aged 65–85 years who were free of cancer and dementia, and followed them for up to 22 years. We used health record linkage to identify incident cases of cancer and dementia, and split time span to investigate this association. 18,693 (60.1%) and 6897 (22.2%) participants developed cancer and dementia during follow-up. The hazard ratio (HR) of dementia associated with cancer was 1.13 (95% CI = 1.07, 1.20) and dropped to 0.85 (95% CI = 0.80, 0.91) when 449 participants who developed dementia within 2 years were excluded. The diagnosis of cancer seems to facilitate the early detection of dementia cases. Older participants who survive cancer for 2 or more years have lower risk of receiving the diagnosis of dementia over time. The factors that mediate this association remain unclear.
Alzheimer’s disease (AD) is highly comorbid with idiopathic normal pressure hydrocephalus (iNPH) and may diminish the benefits of shunting; however, findings in this area are mixed. We examined postoperative outcomes, with emphases on cognition and utilization of novel scoring procedures to enhance sensitivity.
Methods:
Using participant data from an iNPH outcome study at Butler Hospital, a mixed effect model examined main and interaction effects of time since surgery (baseline, 3 months, 12 months, and 24–60 months) and AD comorbidity (20 iNPH and 11 iNPH+AD) on activities of daily living (ADLs) and iNPH symptoms. Regression modeling explored whether baseline variables predicted improvements 3 months postoperatively.
Results:
There were no group differences in gait, incontinence, and global cognition over time, and neither group showed changes in ADLs. Cognitive differences were observed postoperatively; iNPH patients showed stable improvements in working memory (p = 0.012) and response inhibition (p = 0.010), while iNPH + AD patients failed to maintain initial gains. Regarding predicting postoperative outcomes, baseline AD biomarkers did not predict shunt response at 3 months; however, older age at surgery predicted poorer cognitive outcomes (p = 0.04), and presurgical Repeatable Battery for the Assessment of Neuropsychological Status (RBANS) (p = 0.035) and Mini-Mental Status Examination (MMSE) scores (p = 0.009) predicted improvements incontinence.
Conclusion:
iNPH + AD may be linked with greater declines in aspects of executive functioning postoperatively relative to iNPH alone. While baseline AD pathology may not prognosticate shunt response, younger age appears linked with postsurgical cognitive improvement, and utilizing both brief and comprehensive cognitive measures may help predict improved incontinence. These results illustrate the potential benefits of surgery and inform postoperative expectations for those with iNPH + AD.
Primary progressive aphasias are rare younger-onset dementias. As the label denotes, these dementias are characterised clinically by marked changes in language skills. Evidence over the years has shown that individuals with primary progressive aphasia experience widespread cognitive and behavioural changes that extend beyond language. This evidence, however, seems to be largely ignored or downplayed. This article proposes that linguistic relativity which induces a cognitive bias may be responsible for this omission; it also indicates that a revision of the current diagnostic criteria may need to be revised.
In an initiative to reduce stigma, an academic psychiatrist comes out of the dementia closet: describing his own experience of developing Alzheimer's disease, the accompanying memory problems, the restriction of some of his activities, emotional lability and his increasing reliance on others.
Assent to medical research or treatment may be an intuitively attractive way to address the area between incapacity and capacity that might otherwise be subject to a best interests assessment. Assent has become a widely disseminated concept in law, research, and clinical ethics, but little conceptual work on assent has so far occurred. An exploration of use of assent in treatment and research in children and people with dementia suggests that at least five claims are made on behalf of assent. Since at least some of these may lead to tensions with others, assent requires firmer conceptual underpinning. Whether assent remains primarily a local approach to research in children in the United States, where it appears to fit with legal background conditions, or develops its promise to overturn the dominant, binary, approach to (in)capacity will depend on the strength of future philosophical work to improve the theoretical foundations to assent.
Prevalence of cognitive decline and dementia is rising globally, with more than 10 million new cases every year. These conditions cause a significant burden for individuals, their caregivers, and health care systems. As no causal treatment for dementia exists, prevention of cognitive decline is of utmost importance. Notably, alcohol is among the most significant modifiable risk factors for cognitive decline.
Methods
Longitudinal data across 15 years on 6,967 individuals of the Survey of Health, Ageing and Retirement in Europe were used to analyze the effect of alcohol consumption and further modifiable (i.e., smoking, depression, and educational obtainment) and non-modifiable risk factors (sex and age) on cognitive functioning (i.e., memory and verbal fluency). For this, a generalized estimating equation linear model was estimated for every cognitive test domain assessed.
Results
Consistent results were revealed in all three regression models: A nonlinear association between alcohol consumption and cognitive decline was found—moderate alcohol intake was associated with overall better global cognitive function than low or elevated alcohol consumption or complete abstinence. Furthermore, female sex and higher educational obtainment were associated with better cognitive function, whereas higher age and depression were associated with a decline in cognitive functioning. No significant association was found for smoking.
Conclusion
Our data indicate that alcohol use is a relevant risk factor for cognitive decline in older adults. Furthermore, evidence-based therapeutic concepts to reduce alcohol consumption exist and should be of primary interest in prevention measures considering the aging European population.
In this article, we focus on the definition and application of the sliding scale of capacity. We show that the current interpretations of the sliding scale confound distinct features of the medical decision, such as its urgency, its severity, or its complexity, that do not always covary. We propose that the threshold for assessing capacity should be adjusted based solely on the cognitive complexity of the decision at hand. We further suggest that the complexity of a decision should be identified based on a patient’s particular cognitive deficits. We utilize the current research on the types of deficits that characterize amnestic dementias and examine which types of medical decisions might be most complex for patients with that type of dementia. We conclude that applying the sliding scale based on individualized judgments of cognitive complexity will improve accuracy of assessment of capacity and enable capable patients to participate in medical decision making.
People with dementia at times exhibit threatening and physically aggressive behavior toward care staff in residential aged care facilities (RACFs). Current clinical guidelines recommend judicious use of antipsychotic (AP) medications when there is an immediate risk of harm to care staff in RACFs and non-pharmacological interventions have failed to avert the threats. This article examines an account of how this recommendation can be ethically defensible: caregivers in RACFs may have a prima facie ethical justification, in certain cases, to use APs as an act of self-defense. The author examines whether such uses of APs meet the three commonly invoked conditions of ethically permissible acts of self-defense—namely, the conditions of liability, proportionality, and necessity—and argues that such conditions obtain only in a restricted range of cases. The liability constraint can be satisfied if residents are the only ones who are causally responsible for the threats they pose. Further, the condition of proportionality obtains if there is sufficient objective ground to demonstrate that the harm of using the medications does not outweigh the good to be secured. Lastly, the necessity condition obtains when the medications are used at their lowest effective dosage and caregivers in RACFs can reasonably assume that, for the purpose of averting threats posed by residents, the use of APs is the only available course of action. Not meeting any of these fairly stringent conditions renders uses of APs as acts of self-defense in RACFs morally impermissible actions.
A general obligation to make aggregate research results available to participants has been widely supported in the bioethics literature. However, dementia research presents several challenges to this perspective, particularly because of the fear associated with developing dementia. The authors argue that considerations of respect for persons, beneficence, and justice fail to justify an obligation to make aggregate research results available to participants in dementia research. Nevertheless, there are positive reasons in favor of making aggregate research results available; when the decision is made to do so, it is critical that a clear strategy for communicating results is developed, including what support will be provided to participants receiving aggregate research results.
Medical assistance in dying (MAID) is legal in Canada but cannot be accessed through an advance request. Some data suggest that informal care-givers of persons with dementia support the legalisation of advance requests for MAID. Opponents argue that care-givers' support is due to society's failure to address their well-documented burden and unmet needs. To our knowledge, this assumption has never been tested. To fill this knowledge gap, we conducted a survey among 204 Canadian informal care-givers of persons with dementia to (a) elicit their attitudes towards allowing no longer competent adults to access MAID through an advance request, and (b) test the hypothesis that attitudes are in part driven by the level of burden experienced by care-givers and unmet needs for support. Attitudes were elicited with a clinical vignette involving a woman with Alzheimer's disease who requests MAID while still competent, or through an advance request for the time after she would lose decisional capacity. Informal care-givers' support for MAID ranged from 60 per cent in the scenario where the person is still competent and likely has several more years to live, to 87 per cent when she is depicted as no longer competent, in severe distress and close to death. Quality-of-life considerations and the value of self-determination were key arguments in support of legalising advance requests for MAID. Using multivariable logistic regression, we found no evidence that burden and unmet support needs influence attitudes towards advance requests for MAID, after controlling for other determinants. These findings contribute new insights into people's attitudes towards the sensitive issue of whether MAID should be extended to persons with dementia-induced decisional incapacity.
With increasing numbers of persons living with dementia and their higher rates of hospitalizations, it is necessary to ensure they receive appropriate and effective acute care; yet, acute care environments are often harmful for persons with dementia. There is a lack of dementia education for acute health care providers in Canada. Scotland presently delivers a dementia education program for health care providers, known as the Scottish National Dementia Champions Programme. The objective of this Policy and Practice Note is to present the collaborative work of Scottish experts and Canadian stakeholders to adapt the Dementia Champions Programme for use in Canada. This work to date includes: (a) an environmental scan of Canadian dementia education for acute health care providers; (b) key informant interviews; and, (c) findings from a two-day planning meeting. The results of this collaborative work can and are being used to inform the next steps to develop and pilot a Canadian dementia education program.
Les personnes âgées atteintes de troubles neurocognitifs (démences) vivant en centre d’hébergement adoptent fréquemment des comportements réactifs qui limitent leur engagement dans des occupations. La présente étude vise à identifier des moyens d’intervention centrés sur l’engagement des personnes âgées ayant un trouble neurocognitif avec l’environnement humain et non humain en centre d’hébergement afin de diminuer leurs comportements réactifs, en particulier les comportements d’errance, d’apathie et d’agitation. Cette revue de la portée est basée sur la méthode proposée par Levac et ses collaborateurs (2010). Parmi les 21 études retenues, la plupart s’intéressent à des interventions ciblant l’environnement non humain (n=9) ou ciblant simultanément l’environnement humain et non humain (n=9). Plusieurs de ces interventions sont efficaces pour diminuer les comportements réactifs et permettent aux personnes âgées de s’engager avec leur environnement. Le support de l’environnement humain semble toutefois nécessaire à l’utilisation optimale de plusieurs interventions.
This study investigated the views of people living with dementia and their families/care partners on (i) what they find helpful or unhelpful regarding behavioral changes, i.e. which coping strategies they used for themselves and/or which responses from others, and (ii) what they consider to be appropriate terminology to describe behavioral changes.
Design & setting:
One-on-one semi-structured interviews were conducted with people living with dementia and families/care partners face to face, online, or over the telephone.
Measurements:
Data from open-ended questions were analyzed inductively. Common themes were derived from the data using an iterative approach.
Results:
Twenty-one people living with dementia and 20 family members/care partners were interviewed. Four main themes were derived for helpful responses, and three main themes for unhelpful responses. Helpful responses included providing clear professional support pathways and supportive environments where people living with dementia can engage in physical, cognitive, social, and spiritual activities. Unhelpful responses included discriminatory treatment from others and use of medicalized terminology. Views toward terminology varied; people with lived experience most favored using “changed behaviors” over other terminology. Areas for improvement included targeting dementia stigma, societal education on dementia, and building confidence in people living with dementia by focusing on living well with dementia.
Conclusion:
Knowledge of the views of people living with dementia may assist healthcare professionals to provide more appropriate care for people living with dementia.
The risk factors specific to the elderly population for severe coronavirus disease 2019 (COVID-19) caused by the Omicron variant of concern (VOC) are not yet clear. We performed an exploratory analysis using logistic regression to identify risk factors for severe COVID-19 illness among 4,868 older adults with a positive severe acute respiratory coronavirus 2 (SARS-CoV-2) test result who were admitted to a healthcare facility between 1 January 2022 and 16 May 2022. We then conducted one-to-one propensity score (PS) matching for three factors – dementia, admission from a long-term care facility and poor physical activity status – and used Fisher's exact test to compare the proportion of severe COVID-19 cases in the matched data. We also estimated the average treatment effect on treated (ATT) in each PS matching analysis. Of the 4,868 cases analysed, 1,380 were severe. Logistic regression analysis showed that age, male sex, cardiovascular disease, cerebrovascular disease, chronic lung disease, renal failure and/or dialysis, physician-diagnosed obesity, admission from a long-term care facility and poor physical activity status were risk factors for severe disease. Vaccination and dementia were identified as factors associated with non-severe illness. The ATT for dementia, admission from a long-term care facility and poor physical activity status was −0.04 (95% confidence interval −0.07 to −0.01), 0.09 (0.06 to 0.12) and 0.17 (0.14 to 0.19), respectively. Our results suggest that poor physical activity status and living in a long-term care facility have a substantial association with the risk of severe COVID-19 caused by the Omicron VOC, while dementia may be associated with non-severe illness.