Late-stage Dementia Research Articles

Automated Volumetric Software in Dementia: Help or Hindrance to the Neuroradiologist?

Brain atrophy occurs in the late stage of dementia, yet structural MRI is widely used in the work-up. Atrophy patterns can suggest a diagnosis of Alzheimer disease (AD) or frontotemporal dementia (FTD) but are difficult to assess visually. We hypothesized that the availability of a quantitative volumetric brain MRI report would increase neuroradiologists' accuracy in diagnosing AD, FTD, or healthy controls compared with visual assessment. Twenty-two patients with AD, 17 with FTD, and 21 cognitively healthy patients were identified from the electronic health systems record and a behavioral neurology clinic. Four neuroradiologists evaluated T1-weighted anatomic MRI studies with and without a volumetric report. Outcome measures were the proportion of correct diagnoses of neurodegenerative disease versus normal aging ("rough accuracy") and AD versus FTD ("exact accuracy"). Generalized linear mixed models were fit to assess whether the use of a volumetric report was associated with higher accuracy, accounting for random effects of within-rater and within-subject variability. Post hoc within-group analysis was performed with multiple comparisons correction. Residualized volumes were tested for an association with the diagnosis using ANOVA. There was no statistically significant effect of the report on overall correct diagnoses. The proportion of "exact" correct diagnoses was higher with the report versus without the report for AD (0.52 versus 0.38) and FTD (0.49 versus 0.32) and lower for cognitively healthy (0.75 versus 0.89). The proportion of "rough" correct diagnoses of neurodegenerative disease was higher with the report than without the report within the AD group (0.59 versus 0.41), and it was similar within the FTD group (0.66 versus 0.63). Post hoc within-group analysis suggested that the report increased the accuracy in AD (OR = 2.77) and decreased the accuracy in cognitively healthy (OR = 0.25). Residualized hippocampal volumes were smaller in AD (mean difference -1.8; multiple comparisons correction, -2.8 to -0.8; P < .001) and FTD (mean difference -1.2; multiple comparisons correction, -2.2 to -0.1; P = .02) compared with cognitively healthy. The availability of a brain volumetric report did not improve neuroradiologists' accuracy over visual assessment in diagnosing AD or FTD in this limited sample. Post hoc analysis suggested that the report may have biased readers incorrectly toward a diagnosis of neurodegeneration in cognitively healthy adults.

Blame as participant anger: extending moral claimant competence to young children and nonhuman animals

ABSTRACT Following the social conception of moral agency, this paper claims that many agents commonly exempted from moral responsibility, like young children, adults with late-stage dementia, and nonhuman animals, may nevertheless qualify as participants in moral responsibility practices. Blame and other moral responsibility responses are understood according to the communicative emotion account of the reactive attitudes. To blame someone means having an emotion episode that acts as a vehicle for conveying a particular moral content. Therefore, moral agency is argued to be manifested in communicative exchanges between a claimant and a defendant. While many human and nonhuman agents are justifiably exempted from ascriptions of moral responsibility, this does not necessarily exclude such agents from the community of moral agents altogether. Toddlers and dogs, for instance, seem capable of other-directed reactive attitudes, like resentment, and could, therefore, qualify as participants in moral responsibility practices with respect to the claimant position. Therefore, we may have reason to adopt a distinct claimant-directed participant stance to some beings, even if they fail to qualify as apt targets of blame. This expanded theoretical room for moral agency is argued to make explicit further normative considerations.

Acceptability and preliminary effects of the volunteer-supported Meaningful Moments program to engage older adults with advanced dementia on a hospital-based specialized dementia care unit: a mixed methods study

BackgroundNamaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia.MethodsA mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants’ characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data.ResultsA total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress.ConclusionsUsing a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.

Prevalence and Determinants of Diagnosed Dementia: A Registry Linkage Study Linking Diagnosis of Dementia in the Population-Based HUNT Study to Registry Diagnosis of Dementia in Primary Care and Hospitals in Norway.

A timely diagnosis of dementia can be beneficial for providing good support, treatment, and care, but the diagnostic rate remains unknown and is probably low. To determine the dementia diagnostic rate and to describe factors associated with diagnosed dementia. This registry linkage study linked information on research-based study diagnoses of all-cause dementia and subtypes of dementias, Alzheimer's disease, and related dementias, in 1,525 participants from a cross-sectional population-based study (HUNT4 70+) to dementia registry diagnoses in both primary-care and hospital registries. Factors associated with dementia were analyzed with multiple logistic regression. Among those with research-based dementia study diagnoses in HUNT4 70+, 35.6% had a dementia registry diagnosis in the health registries. The diagnostic rate in registry diagnoses was 19.8% among home-dwellers and 66.0% among nursing home residents. Of those with a study diagnosis of Alzheimer's disease, 35.8% (95% confidence interval (CI) 32.6-39.0) had a registry diagnosis; for those with a study diagnosis of vascular dementia, the rate was 25.8% (95% CI 19.2-33.3) and for Lewy body dementias and frontotemporal dementia, the diagnosis rate was 63.0% (95% CI 48.7-75.7) and 60.0% (95% CI 43.3-75.1), respectively. Factors associated with having a registry diagnosis included dementia in the family, not being in the youngest or oldest age group, higher education, more severe cognitive decline, and greater need for help with activities of daily living. Undiagnosed dementia is common, as only one-third of those with dementia are diagnosed. Diagnoses appear to be made at a late stage of dementia.

Wrist-worn actigraphy in agitated late-stage dementia patients: A feasibility study on digital inclusion.

Wrist-worn actigraphy can be an objective tool to assess sleep and other behavioral and psychological symptoms in dementia (BPSD). We investigated the feasibility of using wearable actigraphy in agitated late-stage dementia patients. Agitated, late-stage Alzheimer's dementia care home residents in Greater London area (n=29; 14 females, mean age±SD: 80.8±8.2; 93.1% White) were recruited to wear an actigraphy watch for 4weeks. Wearing time was extracted to evaluate compliance, and factors influencing compliance were explored. A high watch-acceptance (96.6%) and compliance rate (88.0%) was noted. Non-compliance was not associated with age or BPSD symptomatology. However, participants with "better" cognitive function (R=0.42, p=0.022) and during nightshift (F1.240, 33.475=8.075, p=0.005) were less compliant. Female participants were also marginally less compliant (F1, 26=3.790, p=0.062). Wrist-worn actigraphy appears acceptable and feasible in late-stage agitated dementia patients. Accommodating the needs of both the patients and their carers may further improve compliance.

Exploring the Association Between Physical Activity and Cognitive Function Among People Living with Dementia.

Physical activity preserves cognitive function in people without dementia, but the relationship between physical activity and cognitive domains among people living with dementia is unclear. The objective of this study was to explore the association between physical activity and cognition domains among people living with dementia. Participants living with dementia in residential care facilities (complete case analysis: n = 24/42) completed a battery of cognitive tests (global cognition: Montreal Cognitive Assessment; executive function: Trail-Making Test, Digit Span Forward Test; perception and orientation: Benton Judgement of Line Orientation Test; language: Boston Naming Test; learning and memory: Rey Auditory Verbal Learning Test; complex attention: Digit Symbol Substitution Test). Participants wore an actigraphy monitor on their non-dominant wrist over seven days. We conducted a linear regression for total physical activity (independent variable) with race (white/black), fall risk (Morse Fall Scale), and the number of comorbidities (Functional Comorbidities Index) as covariates, and cognitive tests as variables of interest. Participants were primarily male (75%), white (87.5%), and 50%had unspecified dementia (Alzheimer's disease: 33%). Greater physical activity was associated with poorer global cognition, better executive function, and better learning and memory (ps < 0.05). Physical activity was not related to visuospatial perception, language, or complex attention. Physical activity may preserve executive function and learning and memory among people living with dementia. Wandering is more common in later stages of dementia, which may explain greater physical activity observed with lower global cognition. Regularly assessing physical activity may be useful in screening and monitoring cognitive changes.

Medical aid in dying to avoid late-stage dementia.

Many patients with dementia want the option of using medical aid in dying (MAID) to end their lives before losing decision-making capacity and other abilities that impact their desired quality of life. But, for over two decades, it has been widely understood that these patients cannot (solely because of their dementia diagnosis) satisfy three statutory eligibility requirements in all U.S. MAID laws: (1) decisional capacity, (2) the ability to self-administer the life-ending medications, and (3) a terminal condition with 6 months or less to live. Now, because of recent statutory amendments together with the use of voluntarily stopping eating and drinking (VSED) to quickly advance to a terminal condition, this dementia exclusion from MAID might no longer apply. If combining VSED and MAID is now a possibility for patients with dementia, then clinicians need more guidance on whether and when to support patients seeking to take this path. In this article, we begin to provide this guidance. First, we describe the recent case of an Oregon patient with early-stage Alzheimer's dementia who successfully used VSED to qualify for and use MAID. Second, we discuss prior barriers to using VSED as a bridge to MAID for people with dementia. Third, we describe recent legal changes that might make this path now possible.

‘Proto-conversation’ as a practice in late-stage dementia care

Abstract This study suggests that the concept of proto-conversation may be used to describe and understand communication with people with late-stage dementia who have lost their abilities to produce verbal language. In the study, a multimodal conversation analytic method is used to analyze sequences of interactions between professional caregivers in an elderly care home and people with late-stage dementia. The study shows how minimal actions (shift of gaze directions, vocalizations or bodily movements) not instantly recognizable as intentional, communicative conduct, may be recognized and treated as communicative contributions by engaging the person living with dementia in proto-conversations. In such interactional sequences, the caregivers do not only turn the contributions of persons with dementia into actions through their responses, but they also treat the persons as agentive actors and position them as partners in interaction.

What Makes a Better Life for People Facing Dementia? Toward Dementia-Friendly Health and Social Policy, Medical Care, and Community Support in the United States.

Taking steps to build a more dementia-friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they might consider a "good life" with dementia. Specific proposals, such as payment for dementia care managers and new systems to support high-quality, symptom-based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia.

The use of a digital life story to support person-centred care of older adults with dementia: A scoping review.

A life story (LS) is a tool healthcare professionals (HCPs) use to help older adults with dementia preserve their identities by sharing their stories. Applied health technology can be considered a niche within welfare technology. Combining technology and nursing, such as using life stories in digital form, may support person-centred care and allow HCPs to see the person behind the disease. The study's objective was to summarise and describe the use of life stories in digital form in the daily care of older adults with dementia. A scoping review was conducted in five stages. Database searches were conducted in Cinahl, PubMed, Scopus, Web of Science, and Google Scholar; 31 articles were included. A conventional qualitative content analysis of the collected data was conducted. The qualitative analysis resulted in three categories: (1) benefits for older adults, (2) influence on HCPs' work, and (3) obstacles to implementing a digital LS in daily care. Older adults with dementia can receive person-centred care through a digital LS based on their wishes. A digital LS can enable symmetric communication and serve as an intergenerational communication tool. It can be used to handle behavioural symptoms. Using a digital LS in the later stages of dementia may differ from using it earlier in dementia. However, it may compensate for weakening abilities in older adults by enhancing social interaction.

Can Residents With Late-Stage Dementia Still Engage?

Institutionalized persons with dementia often lack access to meaningful activity, which can lead to agitation, loneliness, and depression. Engagement in activity may improve negative symptoms but is difficult in most settings. In this study, we investigated the degree to which the Reading Buddies Program, in which occupational therapy graduate students read books with residents with dementia, engaged residents. We further assessed whether the level of engagement was affected by various parameters, including those related to interaction, environment, attention, attitude, and activity. The primary outcome measure was engagement percentage-duration of time the book was read divided by duration of time the person with dementia engaged with the book. As expected, increased attention, attitude, and activity parameters were associated with increased engagement. None of the environmental parameters significantly affected engagement. Overall, we found that reading with persons with dementia led to a very high level of engagement and appeared to reduce negative symptoms.

Navigating late-stage dementia: A perspective from the Alzheimer's Association.

Alzheimer's disease (AD) is the most common cause of dementia, a general term for memory loss and decline in other cognitive abilities enough to interfere with daily life. AD accounts for 60% to 80% of dementia cases. The late stage of AD tends to be the shortest stage and, on average, lasts 1 to 2 years. As this stage of the condition progresses, it requires continuous intensive long-term care and around-the-clock intensive care. The Alzheimer's Association stands firm in its commitment to supporting individuals living with AD and other dementia, their care partners, and their health-care providers as they navigate treatment and care decisions across the continuum of the disease. This article is a direct response to recently published works that run counter to the Association's viewpoint. It outlines the Association's perspective on crucial factors for consideration during late-stage dementia care, including advanced directives, palliative care, nutrition, and legal considerations. It explores diverse perspectives from the field, differing from the Alzheimer's Association's stance. Last, it underscores resources available through the Alzheimer's Association, aiming to present a comprehensive perspective on late-stage care for support and assistance to all involved.

Bio-Experiential Technology to Support Persons With Dementia and Care Partners at Home (TEND): Protocol for an Intervention Development Study.

Alzheimer disease and related dementias are debilitating and incurable diseases. Persons with dementia and their informal caregivers (ie, dyads) experience high rates of emotional distress and negative health outcomes. Several barriers prevent dyads from engaging in psychosocial care including cost, transportation, and a lack of treatments that target later stages of dementia and target the dyad together. Technologically informed treatment and serious gaming have been shown to be feasible and effective among persons living with dementia and their care partners. To increase access, there is a need for technologically informed psychosocial interventions which target the dyad, together in the home. This study aims to develop the toolkit for experiential well-being in dementia, a dyadic, "bio-experiential" intervention for persons with dementia and their caregivers. Per our conceptual model, the toolkit for experiential well-being in dementia platform aims to target sustained attention, positive emotions, and active engagement among dyads. In this paper, we outline the protocol and conceptual model for intervention development and partnership with design and development experts. We followed the National Institutes of Health (NIH) stage model (stage 1A) and supplemented the model with principles of user-centered design. The first step includes understanding user needs, goals, and strengths. We met this step by engaging in methodology and definition synthesis and conducting focus groups with dementia care providers (N=10) and persons with dementia and caregivers (N=11). Step 2 includes developing and refining the prototype. We will meet this step by engaging dyads in up to 20 iterations of platform β testing workshops. Step 3 includes observing user interactions with the prototype. We will meet this step by releasing the platform for feasibility testing. Key takeaways from the focus groups include balancing individualization and the dyadic relationship and avoiding confusing stimuli. As of September 2023, we have completed focus groups with providers, persons with dementia, and their caregivers. Additionally, we have conducted 4 iterations of β testing workshops with dyads. Feedback from focus groups informed the β testing workshops; data have not yet been formally analyzed and will be reported in future publications. Technological interventions, particularly "bio-experiential" technology, can be used in dementia care to support emotional health among persons with a diagnosis and caregivers. Here, we outline a collaborative intervention development process of bio-experiential technology through a research, design, and development partnership. Next, we are planning to test the platform's feasibility as well as its impact on clinical outcomes and mechanisms of action. DERR1-10.2196/52799.

CO-DESIGNING A STAGE 1B FEASIBILITY STUDY OF INPATIENT PALLIATIVE COMMUNITY HEALTH WORKER SUPPORT

Abstract Persons living with dementia (PLWD) are 2-3 times more likely than their non-dementia peers to be hospitalized annually and experience burdensome care transitions and treatments at the late stage of dementia. Minoritized PLWDs are significantly more likely to be hospitalized and experience frequent transitions between care settings, and also less likely to access palliative care. There is a pressing need to develop better models of care transition support for PLWDs and their family caregivers. Proactive palliative care can reduce unnecessary hospitalization and improve outcomes for PLWDs and family caregivers. Community health workers (CHW) can effectively bridge cultural gaps between vulnerable patients/families and formal care systems, and provide care navigation and coaching support. We are currently conducting a single-site randomized controlled pilot trial study to co-design with key stakeholders (Stage 1a), implement and assess (Stage 1b) the acceptability and feasibility of a palliative CHW support for hospitalized PLWDs and caregivers. To date, we have conducted a needs assessment with 34 PLWD/caregiver dyads, key informant interviews with 4 palliative care providers and 2 CHW and social care experts, and multiple stakeholder meetings with hospital frontline providers and CHW groups to develop intervention components and research implementation plans that address language and cultural barriers and healthcare provider and system level barriers experienced by PLWD and caregivers from minoritized and financially vulnerable backgrounds. In this presentation, we will describe stakeholder engagement and co-design process outcomes and preliminary findings on intervention fidelity, participant recruitment and retention, and PLWD/caregiver outcomes.

INVESTIGATING THE RELATIONSHIP BETWEEN HABITUAL ACTIVITY AND COGNITIVE DOMAINS AMONG PEOPLE LIVING WITH DEMENTIA

Abstract Habitual activity preserves cognitive function in people without dementia, but the relationship between habitual activity and cognitive domains among people living with dementia is unclear. The purpose of this study was to explore the association between habitual activity and cognition domains among people living with dementia. Participants living with dementia in residential care facilities (complete case analysis: n=24/42) completed a battery of cognitive tests (global cognition: Montreal Cognitive Assessment; executive function: Trail-Making Test, Digit Span Forward Test; perception and orientation: Benton Judgement of Line Orientation Test; language: Boston Naming Test; learning and memory: Rey Auditory Verbal Learning Test; complex attention: Digit Symbol Substitution Test). Participants wore an actigraphy monitor on their non-dominant wrist over seven days. We conducted a linear regression for total habitual activity (independent variable) with race (white/black), fall risk (Morse Fall Scale), and the number of comorbidities (Functional Comorbidities Index) as covariates, and cognitive tests as variables of interest. Participants were primarily male (75%), white (87.5%), and 50% had unspecified dementia (Alzheimer’s disease: 33%). Greater habitual activity was associated with poorer global cognition, better executive function, and better learning and memory (ps&amp;lt; 0.05). Habitual activity was not related to visuospatial perception, language, or complex attention. Habitual activity may preserve executive function and learning and memory among people living with dementia. Wandering is more common in later stages of dementia, which may explain greater habitual activity observed with lower global cognition. Regularly assessing habitual activity may be useful in screening and monitoring cognitive changes.

A MIXED METHODS APPROACH TO UNDERSTANDING SPOUSE AND CHILD CAREGIVERS’ EXPERIENCES OF LUCID EPISODES IN DEMENTIA

Abstract Lucid episodes (LE) in people living with late-stages of dementia (PLWD) have been reported anecdotally, but less is known about how this seemingly unexpected phenomenon is experienced by family members. This study aims to examine variability in family caregivers’ experiences with LE, focusing on the two most common groups of informal caregivers, spouses and children—whether they may exhibit differential appraisals of and responses to LEs. Using a sample of former and current family caregivers from UsAgainstAlzheimer’s A-LIST, we conducted an online survey to spouse and child caregivers (N = 387). Qualitative semi-structured interviews were also conducted with a subset of these caregivers who have witnessed an LE (n = 22). Survey results indicate that child caregivers were more likely to witness a LE. Among “former” caregivers who have witnessed a LE (n = 140), spouses were likely to appraise LEs more negatively and make changes in care decisions (i.e., end-of-life planning and financial decisions) after LE, compared to child caregivers. Among “current” caregivers who have witnessed a LE (n = 80), spouses were more likely to indicate no special circumstances prior to LE, whereas children were more likely to indicate LEs associated with visits from friends and family; there was no difference in positive and negative appraisals of LE between current spouse and child caregivers. Content analysis of qualitative interviews revealed that observed differences between spouses and children were related to their different caregiving contexts, such as relationship history, living arrangement, expectations/motivation, and care resources.

SARCOPENIA AND MOBILITY DYSFUNCTION AS INDICATORS OF INCREASED ADRD RISK IN ASYMPTOMATIC DISEASE

Abstract Sarcopenia, the age-related loss of muscle mass and function, affects up to 30% of older adults. In addition to being an established component of frailty and predictor of mobility dysfunction, sarcopenia is associated with cognitive decline and increased risk of cognitive impairment, with ~70% individuals with late-stage dementia having sarcopenia. In this study, we investigated whether sarcopenia differentiates high- vs low- ADRD risk among 141 community-dwelling, older adults who were healthy controls (HC) or had mild cognitive impairment (MCI) (65% female; mean Age=70±11yr; mean Educ=16±3yr). Using the Brain Health Platform (BHP) developed at the Comprehensive Center for Brain Health, we categorized participants based on measures of resilience, vulnerability, cognitive performance as: Low-risk HC (36.9%); High-risk HC (12.8%), and MCI (50.4%). Amyloid positivity increased across risk groups (20% in Low-risk HC; 33.3% in High-risk HC; 39.1% in MCI). Prevalence of sarcopenia was 26.7% and increased by ADRD risk (12.2% vs 18.8% vs 39.1%, p=0.004). The MCI group had lower flexibility compared to both the low-risk (p=0.024) and high-risk HC (p=0.039) groups. Timed Up and Go (TUG) score increased with risk group (p&amp;lt; 0.001MCI vs Low-risk HC; p=0.005MCI vs High-risk HC). Both mobility measures (i.e., flexibility, TUG) showed good discrimination for MCI vs Low-risk HC [AUC=0.77flexibility; AUC=0.78TUG] as well as for MCI vs High-risk HC [AUC=0.71flexibility; AUC=0.73TUG). Findings suggest that sarcopenia and other markers of mobility dysfunction have the potential to identify asymptomatic individuals at increased risk of ADRD, who could benefit from early intervention.

ASSESSMENT OF OLDER ADULTS’ BEHAVIORAL SYMPTOMS AND THEIR SOCIAL BEHAVIORS USING SURVEYS AND A TECHNOLOGY PLATFORM

Abstract Behavioral symptoms are highly prevalent during the course of cognitive decline associated with dementia. Studies have shown that the social environment may affect these symptoms. Data sources examining the effect of environment come from two ongoing studies: 1) MOnitoring DEmentia-Related Agitation Using Technology Evaluations (MODERATE), focusing on agitation in individuals with later-stage dementia, and 2) Monitoring Apathy, Depression and Anxiety Using Technology Evaluations (ADA), focusing on apathy, depression and anxiety in older adults with or without cognitive decline. To date, a total of 9 dyads have enrolled in MODERATE while a total of 9 participants have enrolled in ADA. Caregivers (MODERATE) and participants with cognitive impairment (ADA) report symptoms via weekly online surveys. MODERATE integrates a modified Cohen-Mansfield Agitation Inventory-Short Form series of questions regarding weekly agitation-related levels/events. The ADA weekly online survey consists of Withdrawal-Apathy-Vigor, a subscale from Geriatric Depression Scale-30, a 4-item depression subscale from Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29), and a 4-item anxiety subscale from PROMIS-29. A multi-sensor array (bed pressure mats, motion sensors, and wearables) is deployed in homes to objectively measure participants’ behaviors. With this array, duration of time-out of home, duration of simultaneous activities detected in more than one room, and the total number of occupants and pets within the home are extracted. Additionally, weekly online surveys inquire as to whether participants have been out of town or have overnight visitors. Associations between social activity and behavioral symptoms are obtained combining digital behavioral-activity biomarkers with frequently reported online behavioral data.

Developing a psychoeducational programme for family caregivers of people living with late stage dementia

AbstractBackgroundFamily caregivers often find it difficult to access information and support in the later stages of dementia. They may have difficulties attending in‐person support groups due to caring responsibilities. If caregivers are able to attend these groups, the information and support is often targeted towards the earlier stages of dementia.MethodAn eight session psychoeducational programme was developed in order to enable caregivers to access peer support and information from professionals with expertise relevant to the later stages of dementia. The programme sessions are held over Zoom and include the following topics: sensory stimulation, nutrition diet and swallowing, legal matters, care in the home and care homes, palliative care and pain management, funeral planning and brain donation. Sessions are co‐facilitated by health and social care professionals with relevant expertise, including a speech and language therapist, dietitian, solicitor and palliative care practitioner. Themes and session content have been co‐created through partnership working between facilitators and programme participants.ResultThe programme has been completed by four groups of caregivers (n = 26). All participants care for someone living with a rare or young onset form of dementia, and include those caring at home as well as caregivers of people living in a care or nursing home. Participants have reported a number of positive outcomes from attending the programme, with one participant stating: ‘Joining this late stage carers group – I was a bit worried about it… it’s absolutely one of the best things I could have done. In some respects, I wish I could have joined this earlier’. The programme is currently being evaluated using a time and cost survey to determine ongoing feasibility.ConclusionThere is a need for accurate and timely access to information and support for family caregivers of people living with dementia in the later stages. Online psychoeducational programmes provide the opportunity for caregivers to access both peer and professional support in their own homes. The development of this programme has benefited from ongoing and iterative input from both caregivers and professionals in the dementia support field.

Play It Again: Differential pupillometry responses to familiar and unfamiliar music: Findings from typical and atypical Alzheimer’s disease

AbstractBackgroundMusic has gained more attention than other art forms as a potent tool in supporting cognitive, emotional and social functioning in dementia populations. Methods for measuring moment‐to‐moment responses ‐ rather than comparing pre‐ and post‐stimulus effects ‐ may enable tailoring of musical experiences for the individual. The current study investigated whether differential pupillometry responses could be established for familiar/unfamiliar music in people living with early‐mid stages of typical, memory‐led Alzheimer’s disease (tAD), atypical ‘visual variant’ of Alzheimer’s disease (posterior cortical atrophy; PCA), and healthy age‐matched controls.MethodPatient groups [tAD = 18; PCA = 21] were recruited via the Specialist Cognitive Disorders clinic at the National Hospital for Neurology and Neurosurgery, London, UK. Healthy older adults [N = 90] were recruited opportunistically via departmental research databases/Join Dementia Research. Pupillometry responses were recorded while participants listened to 30 musical excerpts [classical (N = 5); 1960s (N = 10), 1970s (N = 10), reversed ‘de novo’ tracks (N = 5)], each rated for familiarity: (a) a priori (known/unknown); (b) self‐rated by participants (not familiar‐extremely familiar); and (c) whether the excerpt evoked a memory (yes/no). Background, basic clinical and music experience information was collected, alongside additional neuropsychological assessment in the patient groups. Separate linear regression models obtaining cluster robust standard errors were run to predict pupil response from a priori predicted‐ and subjective‐ratings of music familiarity in each participant group, controlling for demographic factors including disease severity.ResultResults indicate significant within‐group effects of familiarity on pupil response in controls and the tAD group. No effects were observed within the PCA group. Preliminary between‐group analyses including diagnosis as a predictor revealed that, for each music‐pupillometry model, tAD overall pupil dilation responses did not differ significantly compared to controls, however a significant difference was observed between PCA and control pupil dilation responses.ConclusionThe results are discussed in relation to the preliminary finding of preserved differential pupillometry responses to familiar/unfamiliar music in the tAD group. Although the PCA results question the utility of pupillometry in individuals with significant oculomotor dysfunction, pupillometry may serve as a useful non‐invasive ‘biosignal’ for establishing in‐the‐moment response to music, including in post‐verbal individuals in the later stages of dementia.