Caregivers of people with dementia and mental health during COVID-19: findings from a cross-sectional study

Background There is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic. Methods We conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3). Results Caregivers (N =571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001). Conclusions We found that caregivers’ burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors.

Enhancing engagement in meaningful occupation in a dementia town: A qualitative evaluation of MOED – The meaningful occupational engagement intervention for people with dementia

Introduction Engagement in meaningful everyday life occupations is linked to well-being. However, people with dementia are often deprived of engagement. As a response, a Danish Dementia Town was established with the intention of transforming care services to improve opportunities for meaningful engagement. The evidence-based The meaningful occupational engagement intervention for people with dementia (MOED) intervention was developed and implemented in dementia town to enhance meaningful occupational engagement. The purpose of this paper is to evaluate the content, impact and implementation process of MOED. Method To evaluate MOED, we applied a program theory-based qualitative approach, building on participant observations and informal conversations with people with dementia ( n = 7) and staff ( n = 9). Data were analysed from a hermeneutic approach to gain an in-depth understanding of how MOED influenced meaningful occupational engagement and to evaluate the implementation process. Findings The main theme ‘Engagement in meaningful occupations – a conditional and fragile process’ emerged along with three subthemes: ‘Creating an everyday space of meaning: Conditions of the intervention’, ‘Occupational engagement as an opportunity to blossom: Impact of the intervention’ and ‘Professional identity, culture and reflections: Contextual barriers to changes to working practice’. Together, the subthemes illustrate how engagement in meaningful occupations arose. However, opportunities to engage in meaningful occupations were fragile, as they depended on various factors within the context. Conclusion Engagement in meaningful occupations emerged when MOED was applied in accordance with the program theory, as it seemed to create spaces where people with dementia could engage in meaningful occupations and they could blossom over time. However, MOED was only partially implemented in accordance with the developed program theory, as several contextual barriers influenced the sustainability of the intervention. MOED showed potential to support improvement in dementia care activity programmes to enhance opportunities to engage in meaningful occupations in everyday life for people living with dementia.

Using Adaptive Interaction to Simplify Caregiver’s Communication with People with Dementia Who Cannot Speak

Caregivers find it difficult to interact with people with dementia who have lost the capacity for speech. Adaptive Interaction is a simplified approach that uses the nonverbal fundamentals of communication to connect with people who can no longer speak. Here we present Adaptive Interaction as a method for equipping caregivers with these nonverbal skills to increase communication with the people they care for. Six caregivers were each paired with one individual with dementia and trained in Adaptive Interaction. After receiving training in Adaptive Interaction, caregivers identified more communicative behaviours in their interactions partners and engaged in more frequent positive social behaviours and meaningful actions during interactions. These findings suggest that it is possible to equip staff to use simplified communication based on nonverbal fundamentals to connect with people with dementia who can no longer speak.

What constitutes ‘good’ home care for people with dementia? An investigation of the views of home care service recipients and providers

Background Our objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia. Methods We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke’s six-step approach. Results Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers’ understanding of dementia and its impact; 2) Home care workers’ demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers’ knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. Conclusions It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. Trial registration ACTRN 12619000251123.

Associations Between Cognitive Function, Depression, and Olfactory Function in Elderly People With Dementia in Korea

Early detection is important for delaying or preventing cognitive impairment. Since olfactory dysfunction and depression are common symptoms of cognitive dysfunction, they may serve as measurable risk indicators. This study was designed to identify the relationship between olfaction, depression, and each domain of cognitive function in elderly dementia patients in South Korea. Study participants were 108 patients who visited the outpatient clinic between March and September 2019. More significant impairment of olfactory function was found in those with mild (7.48 ± 1.28) or moderate (7.37 ± 2.22) test scores of the Expanded Clinical Dementia Rating (CDR) scale than in those with questionable scores (20.58 ± 6.18). The language domain of cognitive function, age, and education level showed 39.2% explanatory power for olfactory function (F = 5.591, p &lt; 0.001). It is expected that assessment of olfactory function in elderly people can lead to the early detection, diagnosis, and treatment of dementia. Furthermore, it is important for future studies to confirm the relationship between each domain of cognitive function and olfactory function according to the type of dementia and to establish criteria for screening dementia in order to utilize olfactory function as a clinical marker.

Psychometric Validation of The Cognitive Abilities Screening Instrument Using Rasch Analysis In People With Dementia

Background: The Cognitive Abilities Screening Instrument (CASI) is one of the most commonly used cognitive screening tools to assess overall cognitive function in people with dementia. However, the unidimensionliaty of the CASI using Rasch analysis has not been evaluated in people with dementia, limiting its utility in clinical and research settings. Unidimensionality verifies whether all items of a measure reflect a single theoretical construct, which is necessary to determine whether clinicians and researchers can appropriately use the sum scores of the CASI to describe overall cognitive function. This study aimed to examine unidimensionality of the CASI using Rasch analysis and estimate Rasch person reliability in people with dementia. Methods: CASI data of people with dementia was collected from medical records of one general hospital in northern Taiwan. A total of 506 people with dementia were recruited from the Department of Neurology. Unidimensionality was confirmed through two assumptions: (1) the infit and outfit mean square (MnSq) were 0.6-1.4, and (2) residual variance of the first principal component in principal component analysis was ≤ 20%. Rasch person reliability was estimated after undimensionality was supported. Results: One item from the list-generating fluency dimension was misfitted (outfit MnSq=1.42) and was deleted. The unidimensionality of the remaining 45 items (referred to as the CASI-45) was supported with an infit and outfit MnSq (0.85-1.24 and 0.84-1.28, respectively) and low residual variance of the first principal component (12.8%). The Rasch person reliability of the CASI-45 was 0.62. Conclusion: The CASI-45 showed a unidimensional construct and had acceptable Rasch person reliability in people with dementia.

Dementia: An Overview (Preprint)

BACKGROUND Dementia is a serious terminal and irreversible disease that often does not receive attention from the public compared to other non-communicable diseases. This disease causes a decline in cognitive function in individuals and makes them have to depend on others for 5-20 years of their life span. OBJECTIVE The purpose of this paper is to provide an overview of dementia and other things related to this disease. METHODS The writing method in this article uses a narrative review on several scientific sources and journal articles published in 2011-2021 from several databases such as Google Scholar, CINAHL, ProQuest, PubMed, and EBSCO. RESULTS Dementia is one of the non-communicable diseases that can cause a high burden on individuals, families, communities, and countries as a result of the unproductiveness and total dependence of people with dementia on their surrounding environment due to the decline in body functions that occur. The caregiver burden experienced by caregivers includes physical, psychological, social and financial burdens. Support and assistance from professional health workers for people with dementia as well as caregivers and families can be provided through several efforts such as providing information related to illness, assistance in the care provided, providing counseling to prevent caregiver burdens and other problems, forming support groups for dementia caregivers, and advocacy for people with dementia and their families to get their rights. CONCLUSIONS Change efforts and policy making by the government that are more pro-people with dementia can change the perception that has been in society so far to be more positive and can potentially contribute to people with dementia.