Experiences of people with dementia and their caregivers during the COVID-19 pandemic in India: a mixed-methods study

Background The COVID-19 pandemic has unprecedented consequences for the management of chronic diseases such as dementia. However, limited evidence exists on the condition of persons with dementia and their caregivers during the pandemic in lower-middle-income countries (LMICs). The study aimed to provide insights into the experiences of persons with dementia and their families during the early phases of the pandemic in India. Methods This study adopted a mixed-method approach. One hundred and four persons with dementia and their caregivers were evaluated via telephone using validated instruments and a semi-structured interview guide. We used the quantitative data collected to establish a baseline, whereas qualitative data were analysed thematically. Results The study revealed that persons with dementia and their caregivers experienced difficulties during the pandemic, which included worsening of behaviour, problems in accessing care, disruptions in functional activities and struggles in enforcing infection prevention contributing to caregiver distress. An important finding that emerged was the unchanging reality of caregiving for families. The relative success of the public health response to the COVID-19 pandemic contrasted with the lack of awareness and formal support for dementia. Conclusions The COVID-19 pandemic has exposed the vulnerabilities of persons with dementia and their caregivers. This calls for a collaborative reframing of medical care and public health policies to address dementia care

Designing with and for People with Dementia: Wellbeing, Empowerment and Happiness

Designing with and for People with Dementia: Wellbeing, Empowerment and Happiness is the International Conference 2019 of the MinD Consortium, the DRS Special Interest Group on Behaviour Change and the DRS Special Interest Group on Wellbeing and Happiness, hosted by the Technische Universität Dresden, in Dresden, Germany. The conference proceedings provide trans-disciplinary contributions for researchers, practitioners, end-users and policy makers from the design and health care professions in terms of new findings, approaches and methods for using design to improve dementia care and to support people with dementia and their carers. The conference has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 691001, and from the DFG German Research Foundation

Systematic review of dyadic psychoeducational programs for persons with dementia and their family caregivers

Aims and Objectives Synthesising evidence for effects of dyadic psychoeducational support programs on both people with dementia and their caregivers\u27 health and well-being. Background There is an increasing need for psychoeducational support programs for people with dementia and their caregivers; therefore, it is important to identify the benefits and practical implications of the programs on the dyads. Methods Guided by Joanna Briggs Institute (JBI) methodology, and Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) framework, a systematic search of literature was conducted on dyadic psychoeducational programs published in English between January 2012 and January 2021 from four electronic databases. Results Twenty-four studies evaluating 27 psychoeducational programmes were included in this review. Programs varied in activity types, intensity and duration. Outcome effects on people with dementia were grouped into seven categories: quality of life, cognitive function, psychological and mental health, physical health, changed behaviours, communication and relationship, institutionalisation or mortality. Outcome effects on caregivers were grouped into six: psychological and mental health, quality of life, impact of caregiving, communication and relationship, physical health, and competency. Dyadic psychoeducational programs which were goal oriented and tailored to address individual needs had consistent benefits on various aspects of health and quality of life for the dyads. Conclusions Multicomponent psychoeducational support programs combined with addressing individual needs, identifying goals and providing support to attain specific outcomes are recommended. Given the progressive deterioration of people with dementia, and the increased needs for homecare by family members, delivering long-term, support programs are recommended to maintain the positive effects on the dyads. Relevance to Clinical Practice The findings contribute to dementia-care provision and policy making and inform the development of person-centred interventions and governance. Patient or Public Contribution This systematic review was a part of a larger service evaluation project which involved a dementia consumer advisory group

Behavioral Management Related to Dementia in the Elderly in a Long Term Care Facility

Alzheimer’s disease (AD) is the most common cause of dementia in adult life and recognized as the most common cause of late life dementia world wide. Care of an elderly individual with dementia requires a systematic approached to the management of behavioral disturbances. The purpose of this project was to provide education regarding management of an elderly individual with behavioral disturbance related to dementia to health care providers in long term care facilities. The project was conducted in three rural long term care facilities. Healthcare providers who receive education can become more competent in intervening with an individual who is exhibiting behavioral difficulties

Delirium i praktyki pielęgniarskie oparte na dowodach naukowych: Aktualne informacje o pandemii Covid-19

Delirium is a complex neuropsychiatric syndrome characterized by an acute onset of cognitive, attention, disorientation and change in the level of consciousness. Delirium is a serious health problem that is common at all ages and medical conditions in many places from the emergency department to the operating room. Delirium symptoms can develop within hours or days and last longer than a month. Nurses have important roles in diagnosing delirium and managing the process with evidence-based practices in patient care. Delirium screening and diagnostic measurement tools used for delirium risk classification and diagnosis should be used by nurses who care for the patient day and night. High mortality in the delirium table, a long stay in the intensive care unit or in the hospital lead to high maintenance costs. The prevalence rates of delirium in patients with Covid-19 have increased. The triggering factors that cause delirium in the Covid-19 pandemic may be social distance and social isolation, deep sedation practices, high fever, prolonged mechanical ventilation, delayed extubation due to aerosol propagation anxiety, inadequate pain assessment, psychological perceptions (mass death), multiple organ dysfunctions. It is known that the application of the ABCDEF (Assessing Pain, Both Spontaneous Awakening and Breathing Trials, Choice of Drugs, Delirium monitoring/management, Early exercise/mobility, and Family Empowerment) care package is effective in the management of delirium. It is recommended to use the ABCDEF care package for delirium management in Covid-19 patients. In this review, evidence-based practices are included in the prevention of delirium and nursing care in the coronavirus (SARS-CoV-2) pandemic affecting the whole world. (JNNN 2022;11(2):74–82).Delirium to złożony zespół neuropsychiatryczny charakteryzujący się ostrym początkiem zaburzeń poznawczych, uwagi, dezorientacji i zmianą poziomu świadomości. Delirium to poważny problem zdrowotny, występujący w każdym wieku i w każdym stanie zdrowia, w wielu miejscach — od oddziału ratunkowego po salę operacyjną. Objawy delirium mogą pojawić się w ciągu kilku godzin lub dni i trwać dłużej niż miesiąc. Pielęgniarki odgrywają ważną rolę w diagnozowaniu delirium i zarządzaniu procesem, stosując w opiece nad pacjentem praktyki oparte na dowodach naukowych. Testy przesiewowe i diagnostyczne wykorzystywane do klasyfikacji ryzyka delirium i diagnozowania powinny być stosowane przez pielęgniarki, które opiekują się pacjentem w dzień i w nocy. Wysoka śmiertelność w grupie chorych z delirium, długi pobyt na oddziale intensywnej terapii lub w szpitalu prowadzą do wysokich kosztów utrzymania. Częstość występowania delirium u pacjentów z Covid-19 wzrosła. Czynnikami wyzwalającymi delirium w pandemii Covid-19 mogą być: dystans społeczny i izolacja społeczna, praktyki głębokiej sedacji, wysoka gorączka, przedłużona wentylacja mechaniczna, opóźniona ekstubacja z powodu lęku przed rozprzestrzenianiem się aerozolu, niewłaściwa ocena bólu, percepcja psychologiczna (masowa śmierć), dysfunkcje wielonarządowe. Wiadomo, że stosowanie pakietu opieki ABCDEF (ocena bólu, próby spontanicznego przebudzenia i oddychania, wybór leków, monitorowanie/zarządzanie w przypadku delirium, wczesne ćwiczenia/mobilność i wzmocnienie pozycji rodziny) jest skuteczne w postępowaniu w przypadku delirium. Zaleca się stosowanie pakietu opieki ABCDEF w leczeniu delirium u pacjentów z Covid-19. W niniejszym przeglądzie uwzględniono oparte na dowodach naukowych praktyki w zapobieganiu delirium i opiece pielęgniarskiej w pandemii koronawirusa (SARS-CoV-2) dotykającej cały świat. (PNN 2022;11(2):74–82)

Alzheimer\u27s Disease and Intimacy: A Content Analysis of Resources Avaliable through the Alzheimer\u27s Association and the National Institute on Aging

An estimated 5.4 million individuals in the United States have Alzheimer’s disease, and the number is expected to rise exponentially over the next 50 years. Content analysis was used to examine the availability and content of online resources accessible through the Alzheimer’s Association and the National Institute on Aging (NIA) that addressed emotional and physical intimacy for a marital unit. The analysis resulted in ten documents from the Alzheimer’s Association’s website, seven from the NIA’s website, and four additional documents produced from external links that met these criteria. Five major themes emerged from these documents regarding the subject of emotional and physical intimacy. These categories included: (a) defining sexuality and intimacy, (b) changes that occur in the relationship due to a dementia diagnosis, (c) reasons for the change in the relationship, (d) responses to a dementia diagnosis, and (e) strategies for managing the changes due to a dementia diagnosis

Workforce development to provide person-centered care

OBJECTIVES: Describe the development of a competent workforce committed to providing patient-centered care to persons with dementia and/or depression and their caregivers; to report on qualitative analyses of our workforce's case reports about their experiences; and to present lessons learned about developing and implementing a collaborative care community-based model using our new workforce that we call care coordinator assistants (CCAs). METHOD: Sixteen CCAs were recruited and trained in person-centered care, use of mobile office, electronic medical record system, community resources, and team member support. CCAs wrote case reports quarterly that were analyzed for patient-centered care themes. RESULTS: Qualitative analysis of 73 cases using NVivo software identified six patient-centered care themes: (1) patient familiarity/understanding; (2) patient interest/engagement encouraged; (3) flexibility and continuity of care; (4) caregiver support/engagement; (5) effective utilization/integration of training; and (6) teamwork. Most frequently reported themes were patient familiarity - 91.8% of case reports included reference to patient familiarity, 67.1% included references to teamwork and 61.6% of case reports included the theme flexibility/continuity of care. CCAs made a mean number of 15.7 (SD = 15.6) visits, with most visits for coordination of care services, followed by home visits and phone visits to over 1200 patients in 12 months. DISCUSSION: Person-centered care can be effectively implemented by well-trained CCAs in the community