Mary Michael, Vice President, Patient Advocacy and Stakeholder Management, Otsuka America Pharmaceutical, Inc.

To evaluate the extent to which the cost of both treated and untreated agitation in Alzheimer’s disease has been studied in order to inform future research and development of predictive models of the cost of untreated agitation in Alzheimer’s disease.

There is inadequate understanding of the costs of agitation in Alzheimer’s disease in the scientific and academic literature. Agitation in Alzheimer’s disease contributes to negative social and financial outcomes for people with the condition, their care partners, and health systems. When left untreated, the impact of these outcomes is exacerbated, yet the scale of this impact is unknown. This gap in the literature both reflects and perpetuates the broader under-recognition of agitation as a serious unmet need in the Alzheimer’s community. Conversely, a better understanding of the costs can help elevate agitation within the global Alzheimer’s dialogue.

We used MEDLINE, PubMed, PsychINFO the Cochrane Library and Google Scholar databases to identify relevant articles published between 2000 until May 2020. We also reviewed reliable literature published outside of these databases. Keywords utilized in the search include agitation in Alzheimer’s, neuropsychiatric symptoms of Alzheimer’s, cost of informal and formal care, Medicare and Medicaid costs, economic costs associated to delirium, among others. Only articles in English were included. Inclusion and exclusion criteria were determined by study design, data source and population studied, number of cases included in analysis, source of health service use or cost data, statistical methods and agitation in Alzheimer’s attributable and/or incremental costs.

Results will describe the breadth and depth to which costs of treated and untreated agitation in Alzheimer’s have been examined, indicating data and statistical methodology used.

This literature review serves as the basis for understanding global costs of agitation in Alzheimer’s disease. From our analysis, we recommend that further cost modeling activities be conducted. We also urge the greater community to use these findings to elevate agitation to the top of the Alzheimer’s agenda.

Cognitive reserve, or the extent to which brain can cope with damage, is associated with extended healthy aging and with slow age-related cognitive decline, as well as a lower number of dementia-associated clinical cognitive signs. Thus, understanding how cognitive reserve might affect different cognitive abilities is important. This study aims at investigating the associations between cognitive reserve and linguistic abilities in a group of Spanish older adults with Alzheimer’s disease.

The sample comprised 25 older adults with a clinical diagnostic of AD with mild to moderate dementia, and 25 controls who were residing in care homes from the province of Granada and with ages between 52 and 92 years old (M= 83.40, SD= 7.18). The Mini Mental State Examination (MMSE), the Global Deterioration Scale, the Cognitive Reserve Questionnaire, and the Short Form of the Boston Naming Test for Individuals with Aphasia were used to collect data. Correlations and regression analysis were performed.

Results showed that cognitive reserve positively and significantly correlated with naming and with phonological fluency but not with semantic fluency word or sentence repetitions or with the global cognitive functioning and the severity of cognitive impairment. The regression analysis showed that cognitive reserve explained 24.7% of the variance in spontaneous naming (F=3.764, p=.039). On the contrary cognitive reserve did not predict verbal fluency.

People with higher cognitive reserve score obtained higher scores in phonological fluency and in spontaneous naming and in naming after a semantic clue. Thus, cognitive reserve is linked with better linguistic abilities in AD patients and therefore it should be considered when designing speech therapy interventions for these patients.

Several neurodegenerative conditions negatively impact linguistics skills. Despite this, many studies carried out with these kinds of patients either only include participants with initial stages of cognitive impairment either do not contemplate linguistic skills, or they do assess language in clinical or experimental settings. Due to it this study aims at investigating verbal fluency and spontaneous conversation abilities in a group of institutionalized Spanish older adults with and without cognitive impairment.

The sample comprised 50 older adults who were residing in care homes from the province of Granada and with ages between 52 and 92 years old (M= 83.40, SD= 7.18). The Mini Mental State Examination (MMSE), the Global Deterioration Scale, and the Short Form of the Boston Naming Test for Individuals with Aphasia were used to collect data. In order to analyze the differences in verbal fluency and in spontaneous conversation between participants ANOVA analysis were performed.

Results showed that people without cognitive impairment or with initial stages of Parkinson’s’ disease showed a higher complexity in their spontaneous conversation and obtained higher scores in verbal fluency when compared with patients with Alzheimer’s disease, and with people with cognitive impairment but without a clinical diagnose. No significant differences were found between participants in word or sentence repetitions tasks.

Language impairment in people with cognitive impairment has dramatic consequences, affecting people’s communication and social interaction, their identity and autonomy thus language skills should be assessed in institutionalized older adults with cognitive impairment and interventions should be designed to maintain their linguistic abilities.

Dementia is a clinical syndrome characterized by a decline in cognitive abilities and memory deficits globally. About 90% of patients experience behavioral and psychological symptoms. The use of psychotropic drugs is influenced by the patient symptoms, burden of the caregiver, and the habit of health workers.

To determine the effect of psychoeducation modules to caregivers to increase knowledge, decrease of psychotropic drugs, reduce symptoms and burden of caregivers.

There are 2 steps of studies. The first was a qualitative study to create psychoeducation module and the second was to conduct a pre-experimental study (one group pretest-posttest study). Psychoeducation is given in 2 consecutive weeks.

Fourty caregivers of dementia patients aged 41.3 (± 9.72) years. The psychoeducation modules is associated with decreasing symptoms and the use of psychotropic drugs, increasing knowledge and decreasing the burden of caregivers. At the end, 23% of patients were able to stop using psychotropic drugs and 62% of patients reduced their dose and/or the amount of psychotropic drugs.

The psychoeducation modules to caregivers is associated with a decrease of patient symptoms and the use of psychotropic drugs. Psychoeducation also increases the knowledge of the caregiver and decreases the burden of the caregiver so that this psychoeducation module can be an additional therapy for patients with dementia.

Dementia has become a worldwide concern. According to the World Health Organization, there are 50 million individuals suffering from dementia across the world and approximately 20 million new cases are diagnosed each year. The efficacy of medications in controlling agitation and psychotic symptoms is modest and may cause serious adverse effects, outlining the urge for new treatment methods for patients with dementia. Music therapy (MT) is a nonpharmacologic strategy that is used in patients with early-to-late stages of dementia with promising results.

The aim of this presentation is to evaluate the benefits of music therapy in cognitive functioning and neuropsychiatric symptoms in patients diagnosed with dementia. We also summarize the current knowledge about this topic.

A non-systematic review of the literature was performed on PubMed, PsycINFO and Web of science using selected keywords.

MT sustains its benefit because musical memory regions in the brain are relatively spared compared to cognitive function. “Musical memories” can, thus, be stored longer than non-musical memories, allowing to recall associated life events and emotions. Systematic reviews suggest that MT seem to have a positive effect on symptoms such as depression, anxiety and behavioral problems while the findings concerning agitation/aggression are inconsistent. No large differences were found between studies using live or recorded music although the latter reported more of a consistently positive impact on behavioral and psychological outcomes. The studies using live music, however, reported specific benefits to relationships and interactions.

The majority of the studies have methodological limitations, making it difficult to offer firm conclusions. Despite this, there were positive results on aspects of quality of life, cognitive function, behavioral, psychological, physiological and communication outcomes.

The behavior problems in residents may affect professionals’ performance at work, quality of work life, and even their health. Thus, it is important to have instruments that allow to estimate their prevalence. The objective of this study was to validate the Revised Memory and Behavior Problems Checklist-Nursing Homes (RMBPC-NH; Allen et al., 2003) in a Spanish population. Specifically, it was tested the factor structure of the RMBPC-NH proposed by Wagner et al. (1995). Moreover, the relevance of the different types of problems for the working performance, at the level of individuals and institutions, was explored.

In the present study, a total of 200 professionals participated.

A Confirmatory Factor Analysis was conducted using WLSMV estimator in Mplus 7. Results showed a good fit to the data for the four-factor model (?2(813) = 1733.73, p<.001, CFI = .90, TIL = .90, RMSEA = .08). Thus, it can be concluded that the original factor structure proposed by Wagner et al. (1995) and replicated by Allen et al. (2003) can also be applied to Spanish staff nursing homes. The reliability of the scale was adequate (α from .86 to .93). Moreover, different descriptive and correlational results showed that both the factor scores of the Spanish adaptation of the RMBPC-NH and the importance of each type of problem were associated to different variable related.

After analyzing the factor structure, reliability and validity of the adaptation of the RMBPC-NH scale for Spanish staff nursing homes it has found that it has good psychometric properties, so it could be a useful tool for this population.

This work was funded by the Spanish Ministry of Economy and Competitiveness (grant number PSI2016-79803-R).

Responsive behaviours in dementia are associated with poor outcomes for the person with dementia (PWD) and caregiver burnout. Family caregivers need a variety of tools to manage responsive behaviours. The Baycrest Quick-Response Caregiver Tool was developed to provide caregivers with a tool that can be used in real time. In this study, the feasibility, impact, and effectiveness of this new tool were studied in family caregivers and health care providers (HCP) using quantitative and qualitative measures.

Family caregivers were recruited and were asked to complete a pre-survey before being sent the link to the educational tool. One month after the telephone survey, caregivers were sent an online post-survey to gather their feedback on the tool and the impact of the tool on caregiver well -being. Healthcare providers were also recruited and reviewed the tool through an online feedback survey. The feasibility, impact, and effectiveness of the tool were assessed using quantitative and qualitative measures.

Caregivers had a moderate degree of and reported a high level of competence - these scores were maintained throughout the study. Caregivers reported that tool positively impacted their compassion towards the person with dementia (PWD), and that their interactions with improved. 100% of HCP who completed the feedback survey would recommend the tool to other HCP and to caregivers of PWD. The caregivers and HCP provided specific suggestions for improvement.

The Baycrest Quick-Response Caregiver Tool was found to be feasible and helpful. It provides caregivers and HCP with an additional approach for responsive behaviours.

The quality of long-term care provided to people with dementia (PwD) in care homes can be improved by implementing person-centered care. Family carers of PwD living in care homes are an important part of person-centered care. However, they often experience high levels of burden, even when a family member with dementia lives in a care home. This study examines trends in the involvement of family carers and their perceived role, role overload and self-efficacy.

Data from the Living Arrangements for People with Dementia study, a cross-sectional monitoring study that evaluates developments in care for PwD in care homes in the Netherlands, with four measurement cycles between 2008-2017 was used. Data from the three most current measurement cycles were used, with respectively 144, 47 and 49 participating care homes and 888, 392 and 401 participating family carers. Family involvement was measured by the number of hours per week that family carers visited the PwD and the type of activities they undertook. Perceived caregiving role was measured with the Family Perceptions of Caregiving Role instrument. We used the Self-Perceived Pressure by Informal Care to measure role overload and a 37-item questionnaire was used to measure self-efficacy. We investigated the changes over time (e.g., measurement cycles) of these measures.

The number of hours that family carers visited the PwD did not change over time. However, there was a trend towards an increase in the variety of activities they undertook. Their perceived caregiving role did not change over time. Self-efficacy of family carers increased over time and they reported more feelings of role overload.

During the past decade, there has been an increasing trend towards family carers doing more diverse activities with PwD in carer homes. Family carers did feel more competent in their caring role, although their feelings of role overload also increased. Continuing attention is therefore needed for the psychological well-being of family carers after a person with dementia moves to a care home.

This study aimed to describe the person-centered experience of symptoms and impact of dementia-related psychosis (DRP) from a patient and care partner (CP) perspective.

This observational, non-interventional, prospective study collected patient experience data to understand the impact of DRP in persons with various dementia subtypes. Qualitative interviews were conducted with persons or their CP who have a clinical diagnosis of all-cause dementia with psychotic symptoms, recruited through physician referrals. The quantitative online survey was completed by persons with self-reported DRP or their CP recruited by advocacy groups: UsAgainstAlzheimer’s and the Lewy Body Dementia Association. CP burden was beyond the scope of this study.

Sixteen individuals (1 patient, 15 CP) participated in the qualitative interview. The most commonly reported symptoms of DRP were visual hallucinations (88%), auditory hallucinations (69%), and persecutory delusions (56%). Participants described an impact of DRP on activities of daily living (75%), sleep (63%), family life (56%), and safety concerns (56%).

The quantitative portion was completed by 212 participants (26 patients, 186 CP). DRP symptoms most frequently reported by patients were visual hallucinations (89%), auditory hallucinations (54%), and distortion of senses (54%); those reported by CP were paranoid delusions (76%), visual hallucinations (75%), and lack of trust for loved ones (52%). For patients with recent visual hallucinations, 61% of patients and 70% of CP reported experiencing this symptom on a weekly basis. When asked to rank the impact on the patient’s life, patients reported that visual hallucinations were the most impactful symptom whereas CP reported paranoid delusions/false beliefs as most impactful, followed by visual hallucinations. Difficulty differentiating what is real from what is not real, increased anxiety, and effects on personal relationships were the most common types of impacts reported by both patients and CP. Most patients (>40%) were not receiving medications for DRP.

Persons with DRP experience hallucinations and delusions that have a substantial impact on their lives. Here, patient experience data demonstrate that there is a need for treatments to reduce the symptoms and impacts of DRP.

Study Sponsored By: ACADIA Pharmaceuticals Inc.

TF is a consultant with Frangiosa & Associates, LLC.

VB and AT have no relevant financial relationships to disclose.

TB, BK, and VA are employees of and may hold stock and/or stock options with ACADIA Pharmaceuticals Inc.

As in other countries, Portuguese family caregivers have unmet needs regarding information and distress. START (STrAtegies for RelaTives) is a manual-based coping intervention for families of people with dementia, including coping strategies and stress-management components, by Livingston and colleagues (https://www.ucl.ac.uk/psychiatry/research/mental-health-older-people/projects/start). In the UK, START has been clinically effective, immediately and continuing even after 6-years, without increasing costs. Clinical training and supervision ensures treatment fidelity. In Portugal, these kind of interventions are less available and, when provided, are mostly supportive and fail to address coping strategies. Paradoxically, recruitment may also prove challenging.

We describe the development of the Portuguese translation of START, incorporating guidance from the UK team, and a pilot study of delivery to family caregivers of people with dementia. We will also discuss the challenges of recruiting participants and delivering the intervention.

We translated the START intervention and recruited family caregivers from neurology and psychiatry outpatients, in a central hospital in Lisbon. Our baseline assessment included the Hospital Anxiety and Depression Scale and the Zarit Burden Interview. The pilot is still ongoing at time of submitting, so we focus on recruitment, baseline assessments and process issues.

During a three-month period, we recruited six caregivers. Five were primary caregivers (spouses or adult children) who had been caring for their relatives for 2 up to 10 years. Two caregivers met the international cutoff for clinically relevant affective disorder . The most frequent motivators for taking part were learning to communicate with their relatives and increasing knowledge to build community resources. Overall, the subjective impression of the therapist in charge is that the intervention seems acceptable and promising.

This pilot study will eventually lead to an improved version of the Portuguese version of the START manual. So far, the intervention seems appropriate for selected caregivers in Portugal. However, response to striking unmet needs, particularly basic home support, may need to precede interventions like START. We look forward to concluding the intervention study and analyzing the implementation challenges, as a basis to inform a wider-scale trial.

Providing care for people with behavioural and psychological symptoms of dementia is stressful as these individuals are commonly labelled as aggressive or resistant to care. Few studies have evaluated the impact of providing support to professional caregivers working in long-term care. Our mixed methods pilot study evaluated the impact of the innovative Affect Education Model among health care providers from two Toronto nursing homes.

The two-person centred Affect Educational Model through the use of seven questions that encourage self-reflection teaches that problematic behaviours are co-constructed between individuals with BPSD and caregivers. Study procedures included recruiting nursing staff and personal support workers and teaching them the model in five weekly 30-minute group sessions. Qualitative measures in the form of focus groups were obtained. Quantitative measures were obtained through the use of five questionnaires.

Qualitative findings from focus groups identified four themes: facilitators and barriers perceived in current care delivery, the impact of the model experience on staff care delivery, reflections on being taught the model, and future model implementation. Quantitative results were also collected and discussed.

The use of both pharmacologic and nonpharmacologic treatment of individuals with BPSD may be greatly enhanced by an interpersonal two-person Affect Education Model that emphasizes the importance of calming down and self-reflection. Future directions include expanding the model to family caregivers through the use of multimedia resources.

Caregivers of persons with Alzheimer’s Disease and Other Dementias are a population in need of support as they are vulnerable to emotional, physical, and mental exhaustion associated with caregiver burnout. While CDC guidelines state that social distancing is the greatest protective factor, it can already exacerbate feelings of isolation and stress. Technology offers the opportunity to maximize socialization and access to healthcare; however, research shows that digital platforms are most underutilized by older and lower socioeconomic patients.

This report describes the transition of a weekly caregiver support group from telephone to video conferencing to improve connectedness during a period of social isolation.

In 2020, the caregiver support group met weekly over the phone. At each session, there were increased discussions of moving the telephone support group to a video platform. A focused discussion about technology platforms was held to gain an understanding of caregiver attitudes and thoughts regarding technology in which caregivers worried that a video platform would be intrusive and invasive. In June 2020, unreliable phone service resulted in the group transitioning to video.

The caregiver group consisted of 5 active members, 2 African American, 2 Asian, and 1 Caucasian. Initial problems included connectivity issues, needing to switch to multiple devices, and assistance with troubleshooting and utilizing the platform. However, caregivers reported feeling that the transition to video was the most natural next step and assisted with reducing feelings of isolation, anxiety, and fear they reported as a result of social distancing due to COVID-19. Caregivers reported feeling connected and because they knew each other so intimately, no longer felt video was intrusive.

For older populations who are not familiar with technology, it is important to take steps before beginning a new platform service. This allows for a natural progression to unfamiliar technology. The video platform provided an opportunity for caregivers to be together while apart, which is important for mental health and decreasing caregiver burden.