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This chapter describes pseudoscience and questionable ideas related to neurocognitive disorders. The chapter opens by discussing facts that rebut pervasive myths and pseudoscience. Provider barriers to diagnosis and patient education are also considered. The chapter elaborates on the problems associated with persistent searchers for a cure and the hype of pharmacological interventions. The chapter closes by reviewing research-supported approaches.
Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading to a heavy reliance on informal support networks. The present study explores the personal experiences of people living with dementia and carers living in rural areas, seeking to discover both benefits and challenges, as well as recommendations within the literature for improving the lives of those affected by dementia in rural areas. A scoping review following the framework of Arksey and O'Malley identified 60 studies that describe or discuss the personal experience of dementia (either by the person with dementia or carer), in relation to living in rural or remote geographical areas. Four overarching themes were derived, namely the possible benefits of living in a rural community (supportive rural communities), sources of strength described by people affected by dementia in rural areas (managing and coping), detrimental aspects of living in a rural community (rural community challenges) and difficulties with dementia care services. Three further themes yielded recommendations for improving the experience of dementia in rural areas. This review highlights some potential opportunities related to living in rural areas for people living with dementia. These often come with parallel challenges, reflecting a delicate balance between being well-supported and being in crisis for those living in rural areas. Given the limited access to formal services, supporting people with dementia in rural areas requires input and innovation from the people, organisations and services local to those communities.
The International Psychogeriatric Association (IPA) published a provisional consensus definition of agitation in cognitive disorders in 2015. As proposed by the original work group, we summarize the use and validation of criteria in order to remove “provisional” from the definition.
This report summarizes information from the academic literature, research resources, clinical guidelines, expert surveys, and patient and family advocates on the experience of use of the IPA definition. The information was reviewed by a working group of topic experts to create a finalized definition.
We present a final definition which closely resembles the provisional definition with modifications to address special circumstances. We also summarize the development of tools for diagnosis and assessment of agitation and propose strategies for dissemination and integration into precision diagnosis and agitation interventions.
The IPA definition of agitation captures a common and important entity that is recognized by many stakeholders. Dissemination of the definition will permit broader detection and can advance research and best practices for care of patients with agitation.
Several etiologies can underlie the development of late-onset psychosis, defined by first psychotic episode after age 40 years. Late-onset psychosis is distressing to patients and caregivers, often difficult to diagnose and treat effectively, and associated with increased morbidity and mortality.
The literature was reviewed with searches in Pubmed, MEDLINE, and the Cochrane library. Search terms included “psychosis,” “delusions,” hallucinations,” “late onset,” “secondary psychoses,” “schizophrenia,” bipolar disorder,” “psychotic depression,” “delirium,” “dementia,” “Alzheimer’s,” “Lewy body,” “Parkinson’s, “vascular dementia,” and “frontotemporal dementia.” This overview covers the epidemiology, clinical features, neurobiology, and therapeutics of late-onset psychoses.
Late-onset schizophrenia, delusional disorder, and psychotic depression have unique clinical characteristics. The presentation of late-onset psychosis requires investigation for underlying etiologies of “secondary” psychosis, which include neurodegenerative, metabolic, infectious, inflammatory, nutritional, endocrine, and medication toxicity. In delirium, psychosis is common but controlled evidence is lacking to support psychotropic medication use. Delusions and hallucinations are common in Alzheimer’s disease, and hallucinations are common in Parkinson’s disease and Lewy body dementia. Psychosis in dementia is associated with increased agitation and a poor prognosis. Although commonly used, no medications are currently approved for treating psychosis in dementia patients in the USA and nonpharmacological interventions need consideration.
The plethora of possible causes of late-onset psychosis requires accurate diagnosis, estimation of prognosis, and cautious clinical management because older adults have greater susceptibility to the adverse effects of psychotropic medications, particularly antipsychotics. Research is warranted on developing and testing efficacious and safe treatments for late-onset psychotic disorders.
Mild cognitive impairment (MCI) is an etiologically nonspecific diagnosis including a broad spectrum of cognitive decline between normal aging and dementia. Several large-scale cohort studies have found sex effects on neuropsychological test performance in MCI. The primary aim of the current project was to examine sex differences in neuropsychological profiles in a clinically diagnosed MCI sample using clinical and research diagnostic criteria.
The current study includes archival data from 349 patients (age M = 74.7; SD = 7.7) who underwent an outpatient neuropsychological evaluation and were diagnosed with MCI. Raw scores were converted to z-scores using normative datasets. Sex differences in neurocognitive profiles including severity, domain-specific composites (memory, executive functioning/information processing speed, and language), and modality-specific learning curves (verbal, visual) were examined using Analysis of Variance, Chi-square analyses, and linear mixed models. Post hoc analyses examined whether sex effects were uniform across age and education brackets.
Females exhibit worse non-memory domain and test-specific cognitive performances compared to males with otherwise comparable categorical MCI criteria and global cognition measured via screening and composite scores. Analysis of learning curves showed additional sex-specific advantages (visual Males>Females; verbal Females >Males) not captured by MCI subtypes.
Our results highlight sex differences in a clinical sample with MCI. The emphasis of verbal memory in the diagnosis of MCI may result in diagnosis at more advanced stages for females. Additional investigation is needed to determine whether these profiles confer greater risk for progressing to dementia or are confounded by other factors (e.g., delayed referral, medical comorbidities).
Domestic gardens represent a site for enacting embodied identity and social relationships in later life, and negotiating tensions between continuity and change. In the context of dementia, domestic gardens have significant implications for ‘living well’ at home, and for wider discussions around embodiment, relational selfhood and agency. Yet previous studies exploring dementia and gardens have predominantly focused on care home or community contexts. In light of this, the paper explores the role of domestic gardens in the everyday lives of people living with dementia and their households, using qualitative, creative methods. This includes filmed walking interviews and garden tours, diaries and sketch methods, involving repeat visits with six households in England. Findings are organised thematically in relation to different ‘ways of being’ in the garden: working in and doing the garden; being in and sensing; and playing, empowerment and agency. These different ‘ways of being’ are situated within relationships with household members, neighbours and non-human actors, including pets, wildlife and the materiality of the garden. Garden practices illustrate continuity, situated within embodied biographies and habitus. However, identities, practices and gardens are also subject to ongoing readjustment and reconstruction. The conclusion discusses implications for extending literature on gardens and later life, describing how social and material relationships in domestic gardens are renegotiated in the context of dementia, while highlighting opportunities for ‘play’, active sensing and agency. We also explore contributions to understandings of dementia, home and place, and implications for garden design and care practice.
Music therapy can lift mood and reduce agitation for people living with dementia (PwD) in community and residential care settings, potentially reducing the prevalence of distress behaviours. However, less is known about the impact of music therapy on in-patient psychiatric wards for PwD.
To investigate the impact of music therapy on two in-patient psychiatric wards for PwD.
A mixed-methods design was used. Statistical analysis was conducted on incidents involving behaviours reported as ‘disruptive and aggressive’ in 2020, when music therapy delivery varied because of the COVID-19 pandemic. Semi-structured interviews conducted online with three music therapists and eight ward-based staff were analysed using reflexive thematic analysis.
Quantitative findings showed a significant reduction in the frequency of behaviours reported as disruptive and aggressive on days with in-person music therapy (every 14 days) than on the same weekday with no or online music therapy (every 3.3 or 3.1 days, respectively). Qualitative findings support this, with music therapy reported by music therapists and staff members to be accessible and meaningful, lifting mood and reducing agitation, with benefits potentially lasting throughout the day and affecting the ward environment.
We identified a significant reduction in the occurrence of distress behaviours on days with in-person music therapy when compared with no music therapy. Music therapy was reported to be a valuable intervention, supporting patient mood and reducing agitation. Interventional studies are needed to investigate the impact of music therapy and its optimum mode of delivery.
The U.S. population is aging and increasing numbers of older adults are using cannabis. Cognitive decline is common in older age and subjective memory complaints (SMC) have been associated with increased risk for dementia. While residual cognitive effects of cannabis use at younger ages are well understood, the links between cannabis use and cognition in older adults is less clear. The present study represents the first population-level analysis of cannabis use and SMC in older adults in the U.S.
We used the National Survey of Drug Use and Health (NSDUH) dataset to evaluate SMC in respondents over age 50 (N = 26,399) according to past-year cannabis use.
Results revealed that 13.2% (95%CI: 11.5%−15.0%) of those who reported cannabis use also reported SMC, compared to 6.4% (95%CI: 6.1%–6.8%) among individuals with no cannabis use. Logistic regression revealed a two-fold increase (OR = 2.21, 95%CI: 1.88–2.60) of reporting SMC in respondents who had used cannabis in the past year, which was attenuated (OR = 1.38, 95%CI: 1.10–1.72) when controlling for additional factors. Other covariates, including physical health conditions, misuse of other substances, and mental illness also significantly contributed to SMC outcomes.
Cannabis use represents a modifiable lifestyle factor that has potential for both risk and protective properties that may impact the trajectory of cognitive decline in older age. These hypothesis generating results are important for characterizing and contextualizing population-level trends related to cannabis use and SMC in older adults.
To explore the care and support received and wanted by United Kingdom (UK) South Asian and White British people affected by dementia and whether access to it is equitable.
Semi-structured interviews using a topic guide.
Eight memory clinics across four UK National Health Service Trusts; three in London and one in Leicester.
We purposefully recruited a maximum variation sample of people living with dementia from South Asian or White British backgrounds, their family carers, and memory clinic clinicians. We interviewed 62 participants including 13 people living with dementia, 24 family carers, and 25 clinicians.
We audio-recorded interviews, transcribed them, and analyzed them using reflexive thematic analysis.
People from either background were willing to accept needed care and wanted competence and communication from carers. South Asian people frequently discussed needing care from someone with a shared language, but language differences could also be an issue for White British people. Some clinicians thought South Asian people had a stronger preference to provide care within the family. We found that preferences for who provides care varied across families regardless of ethnicity. Those with more financial resources and English language have more options for care that meets their needs.
People of the same background make differing choices about care. Equitable access to care is impacted by people’s personal resources, and people from South Asian backgrounds may experience the double disadvantage of having fewer options for care that meets their needs and fewer resources to seek care elsewhere.
The environment, and assistive technologies as part of this, can play an important role in supporting the participation and wellbeing of people living with dementia. If not considered, environments can be overwhelming and disempowering. Disability approaches including environmental considerations and assistive technology were often not offered routinely with people living with dementia. Concerned by this, dementia advocates aimed to create change in this area. The Environmental Design-Special Interest Group (ED-SiG) of Dementia Alliance International was developed as an international consumer-driven community of practice bringing together people with different relevant expertise including living experience (people living with dementia, care partners), architecture and design, occupational therapy, rehabilitation and care provision. This practice opinion piece provides an overview of dementia, the need for collaborative practices within practice with people living with dementia, and the considerations of assistive technology, environmental design and the global context. The reflection provides insights into this international community of practice, with personal reflections of members with living experience of dementia, and benefits and opportunities in considering environmental design and assistive technology from the perspectives of members. This work demonstrates and advocates collaborations that centre the perspectives and expertise of people living with dementia.
Behavioral and psychological symptoms of dementia (BPSD) are a group of noncognitive symptoms that occur commonly among individuals with dementia. These symptoms worsen the morbidity and mortality among individuals with dementia and significantly increase the cost of caring for these individuals. Transcranial magnetic stimulation (TMS) has been shown to have some benefits in the treatment of BPSD. This review provides an updated summary of the effect of TMS on BPSD.
We conducted a systematic review of PubMed, Cochrane, and Ovid databases on the use of TMS to treat BPSD.
We found 11 randomized controlled studies that evaluated the use of TMS among individuals with BPSD. Three of these studies examined the effect of TMS on apathy, two of which showed significant benefit. Seven studies showed that TMS significantly improves BPSD: six using repetitive transcranial magnetic stimulation (rTMS) and one using transcranial direct current stimulation (tDCS). Four studies, two evaluating tDCS, one evaluating rTMS, and one evaluating intermittent theta-burst stimulation (iTBS) showed a nonsignificant impact of TMS on BPSD. Adverse events were predominantly mild and transitory in all studies.
Available data from this review indicate that rTMS is beneficial for individuals with BPSD, especially among individuals with apathy, and is well tolerated. However, more data are needed to prove the efficacy of tDCS and iTBS. Additionally, more randomized controlled trials with longer treatment follow-up and standardized use of BPSD assessments are needed to determine the best dose, duration, and modality for effective treatment of BPSD.
This rapid review of systematic reviews examines non-professional interventions that have been implemented to support family caregivers of older adults with dementia who are living in the community. There is a robust body of empirical literature examining such interventions for family caregivers; therefore, this rapid review includes only systematic reviews. MEDLINE, CINAHL, and EMBASE databases were searched from September 2020 to December 2020, and 19 systematic reviews were selected for a full review. Psychosocial, psychoeducational, social support, and multicomponent interventions consistently show positive impacts on a variety of outcomes. The evidence suggests that multicomponent interventions that are tailored to the needs of individual caregivers are the most impactful interventions and should be utilized in future program development. The most effective combination of interventions is unknown and warrants further investigation. However, the repeated success of psychoeducational, psychosocial, and social support interventions suggests that when used together, they may be a successful combination that contributes to positive impacts on caregivers. This multicomponent intervention should be flexible, as interventions are most effective when they are tailored to the individual needs of caregivers and adapted over time as the needs of the caregiver and person living with dementia change with disease progression.
The use of communities of practice (CoP) to support the application of knowledge in improved geriatric care practice is not widely understood. This case study’s aim was to gain a deeper understanding of the knowledge-to-action (KTA) processes of a CoP focused on environmental design, to improve how persons with dementia find their way around in long-term care (LTC) homes. Qualitative data were collected (key informant interviews, observations, and document review), and analysed using emergent coding. CoP members contributed extensive knowledge to the KTA process characterized by the following themes: team dynamics, employing a structured process, technology use, varied forms of knowledge, and a clear initiative. The study’s CoP effectively synthesized and translated knowledge into practical tools to inform changes in practice, programs, and policy on dementia care. More research is needed on how to involve patients and caregivers in the KTA processes, and to ensure that practical application of knowledge has financial and policy support
Alzheimer's disease and vascular dementia are the two most common types of dementia. It becomes difficult to distinguish between the two, especially when there are no specific genetic causes or vascular changes apparent. The aim of this review was to identify specific biomarkers supporting the diagnosis of vascular dementia by conducting a literature search for systematic reviews and observational studies. We found seven studies meeting our inclusion/exclusion criteria, and from these we identified four specific biomarkers supporting the diagnosis of vascular dementia: high levels of thyroid-stimulating hormone, lipoprotein(a), homocysteine and N-terminal prosomatostatin. However, the studies were small and a well-conducted study with larger populations is recommended to strengthen the evidence base.
Behavioral symptoms associated with dementia, such as agitation, are frequent and associated with well-known negative consequences for patients, their carers, and their environment. Pharmacological treatments for agitation using sedatives and antipsychotics are known to have several undesirable side effects and modest efficacy. Non-pharmacological alternatives are recommended as first-line options for agitation in persons with dementia with few side effects, but there is limited evidence of efficacy. We developed a novel and simple non-pharmacological alternative for agitation in dementia residents based on a Brazilian intervention using warm water surgical gloves used in patients with COVID-19 in intensive care units during the pandemic. We coined it “Mãos de Conforto” – Hands of Comfort. We report a series of 7 cases in 3 residents with dementia who whore Hands of Comfort.
Knowledge on the link of individual social deprivation with dementia is incomplete. We thus aimed to see whether an association with dementia risk can be observed using a recently developed Social Deprivation Index (SoDep Index). Further, as deprivation is related to depression, we investigated the role of depression in the association.
We analysed data of 11 623 Survey of Health, Ageing and Retirement in Europe (SHARE) respondents. Social deprivation status was determined by SoDep Index score. Dementia was determined by self-reported diagnosis. Dementia risk by social deprivation status was estimated using Cox proportional hazard models, including relevant covariates (gender, marriage status, chronic conditions). Depressive symptom status was added in a second step. Further, we completed subgroup analyses by social deprivation status and analysed the relevance of depressive symptoms in dementia risk in each deprivation group. In an additional sensitivity analyses we corrected for mortality and used impaired cognitive testing performance as an alternative outcome.
High (v. low) social deprivation status was associated with an increased dementia risk (hazard ratio (HR) = 1.79 [95% CI 1.31–2.45]) in the Cox analysis adjusted for covariates only. Further adjustment for depressive symptom status indicated a largely direct association between social deprivation status and dementia risk. Moreover, compared to not having experienced depressive symptoms in the past or at baseline, those with past (HR = 1.67 [95% CI 1.23–2.25]), baseline (HR = 1.48 [95% CI 1.04–2.10]) or stable depressive symptoms (HR = 2.96 [95% CI 2.12–4.14]) had an increased dementia risk. The association between stable depressive symptom status and dementia risk was in the high social deprivation subgroup particularly pronounced. Sensitivity analyses replicated results.
Results add to a growing body of evidence indicating that a public health approach to dementia prevention must address socioeconomic inequity. Results suggest a largely direct association between social deprivation and dementia risk. Adults who experience high social deprivation appear particularly affected by detrimental effects of depressive symptomatology on dementia risk and need intervention.
Relationships and marriages between couples with intellectual disability are to be celebrated, as is the longer life expectancy now enjoyed by many with intellectual disability. However, dementia disproportionately affects people with intellectual disability, especially people with Down's syndrome. Research into experiences of couples without intellectual disability who are affected by dementia suggests that a relational perspective provides health and social care professionals with information to support the wellbeing of both partners. This dyadic perspective is missing for couples with an intellectual disability where one partner has dementia. There is currently no evidence base informing how each partner may best be supported. This scoping review, with three separate searches, aims to address this gap. The first search sought to establish if any studies had explored the experiences of couples with intellectual disability where one partner has dementia. After determining that no studies have been published to date, the review explores what is known about relationships in the context of dementia (N = 8) and in the context of intellectual disability (N = 10), in second and third searches. Different ways to approach care and support in relationships among partners, staff and other family members were identified and it was evident that support could act as a facilitator as well as a barrier to people and their relationships. While the lives of couples affected by dementia appeared to remain largely private, couples with intellectual disability had a high involvement of staff and family members in their life. Potential implications for future research with couples with intellectual disability affected by dementia are discussed, highlighting the importance of exploring how couples navigate emotional complexities and changes in their relationship, while understanding that the context in which the lives of people with intellectual disability take place and relationships happen is different.
Individuals with depression have an increased dementia risk, which might be due to modifiable risk factors for dementia. This study investigated the extent to which the increased risk for dementia in depression is explained by modifiable dementia risk factors.
We used data from the English Longitudinal Study of Ageing (2008–2009 to 2018–2019), a prospective cohort study. A total of 7460 individuals were included [mean(standard deviation) age, 65.7 ± 9.4 years; 3915(54.7%) were women]. Depressive symptoms were assessed with the Center for Epidemiologic Studies Depression Scale-8 (score ≥3) or self-reported doctor's diagnosis. Ten modifiable risk factors for dementia were combined in the ‘LIfestyle for BRAin health’ (LIBRA) score. Dementia was determined by physician diagnosis, self-reported Alzheimer's disease or the shortened version of the Informant Questionnaire on Cognitive Decline in the Elderly (average score ≥3.38). Structural equation modelling was used to test mediation of LIBRA score.
During 61 311 person-years, 306 individuals (4.1%) developed dementia. Participants aged 50–70 years with depressive symptoms had higher LIBRA scores [difference(s.e.) = 1.15(0.10)] and a 3.59 times increased dementia risk [HR(95% CI) = 3.59(2.20–5.84)], adjusted for age, sex, education, wealth and clustering at the household level. In total, 10.4% of the dementia risk was mediated by differences in LIBRA score [indirect effect: HR = 1.14(1.03–1.26)], while 89.6% was attributed to a direct effect of depressive symptoms on dementia risk [direct effect: HR = 3.14(2.20–5.84)].
Modifiable dementia risk factors can be important targets for the prevention of dementia in individuals with depressive symptoms during midlife. Yet, effect sizes are small and other aetiological pathways likely exist.
Apathy is a common symptom in mild cognitive impairment (MCI) and may predict progression to dementia. Little research, however, has investigated the longitudinal trajectory of apathy in patients with MCI or controlled for depression, which can mimic apathy, when examining its clinical correlates. The current study sought to address these issues.
A prospective longitudinal study was conducted over 3 years.
Nine memory clinics around Australia
One hundred and eighty-five patients with MCI at baseline.
Measures of cognition, function, neuropsychiatric symptoms, caregiver burden, and medication use were completed annually with additional assessments at 3 and 6 months. Patients were also assessed for dementia by expert clinicians at these time points.
Of 164 patients who completed measures of neuropsychiatric symptoms, 59 (36.0%) had apathy and 61 (37.2%) had depression. The proportion affected by apathy and overall apathy scores increased over time, in contrast to measures of depression, which remained relatively stable. Apathy was associated with incident dementia and worse cognition, function, neuropsychiatric symptoms, and caregiver burden independent of both depression and incident dementia. Depression was associated with worse function, albeit to lesser degree than apathy, and neuropsychiatric symptoms.
Apathy increases in MCI and is associated with worse clinical outcomes. These findings provide further evidence for apathy as a marker of clinical decline in older people and poorer outcomes across neurocognitive disorders.
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.
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.
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.
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.