Dementia Care Practice Research Articles

Drug prescriptions in elderly hospitalized patients with cognitive impairment in the Italian Dementia Friendly Hospital project

ObjectiveThe aim of the study was to characterize drug prescription patterns in elderly patients hospitalized in acute wards as a function of cognitive status and staff training.MethodsWe recorded clinical parameters reflecting health status and drug prescriptions at admission, during hospital stay, and at discharge before and after a short staff training on the needs of aged cognitively impaired patients. Participants aged 65 and older had a Mini-Mental State Examination (MMSE) score ≥16. The number of prescriptions, sedative and anticholinergic load, and drug–drug interactions were evaluated. Of the 116 older patients analyzed, 59 patients were cognitively impaired, and 57 were cognitively normal with an MMSE value > 24. Fifty-nine patients (28 CN, 31 CI) were assisted by the hospital health staff after training.ResultsParticipants presented a widespread polypharmacy. Cognitively impaired patients received more prescriptions, more inappropriate prescriptions, had a greater sedative load, and were exposed to more interactions. Staff training had no effect on the prescription pattern.ConclusionThe results suggest that hospitalized cognitively impaired patients are overprescribed psychotropic drugs and have an excessive sedative and anticholinergic load. Interventions designed to improve dementia care practices in health staff that are not also designed to manage drug polypharmacy do not modify prescription patterns.

Implementing palliative and end of life care for people with dementia.

Dementia is characterised by memory loss, behavioural changes and decline of cognitive, social and physical functions and is a life-limiting condition. At the point of diagnosis it is classed as a palliative condition, yet there is limited public and healthcare professional awareness that, once diagnosed, a person will either die of dementia or die with dementia. This article discusses how the recognition and timing of the need for palliative dementia care is pivotal in providing person-centred care. The authors explore factors such as optimal prognostication, advance care planning, staff education and accessing support from palliative and end of life care teams and Admiral Nurses. The authors also use a fictional case study to demonstrate best practice in palliative dementia care.

Humans: An integrative review exploring dehumanisation in advanced dementia.

Background: People living with advanced dementia risk being seen as someone without personhood in contemporary societies, an understanding that has been described and challenged for decades in dementia scholarly literature. Such perception can be characterised as forms of existential dehumanisation, which still asserts itself in dementia care practices, adversely affecting the ethical and caring aspects of such care.Aim: To challenge dehumanisation in dementia care, we must first learn to recognise what foster it in caring relations. Thus, the aim of our study is to identify existing perceptions of care recipients living with advanced dementia, which elicit dehumanising attitudes among formal caregivers.Research design: We conducted an integrative review based on Whittemore and Knafl's updated methodology. This allowed us to identify and analyse 26 articles incorporating both qualitative- and quantitative studies as well as theoretical- and grey literature all describing perceptions of care recipients living with dementia that lead to dehumanisation.Ethical considerations: Studying the darker sides in caring relations was to be beneficial in improving dementia care practices.Findings: Through an analytical process five themes that can sprout dehumanising attitudes in caring relations were identified, which include perceiving people living with advanced dementia as (1) absurd, (2) shadow, (3) perilous, (4) void, or (5) repugnant. We argue that these perceptions can be seen as unintentional and stem from a misled embodied perception, which caregivers should learn to recognise and consequently be able to resist through virtue ethics.Conclusion: Our study indicates that challenging dehumanisation is a practical matter of identifying and reacting in a timely way to ones misled embodied perceptions. We suggest the five themes offer a potential means to warn formal caregivers of impending dehumanising attitudes and help them to review how they ethically are thinking and perceiving the person living with advanced dementia.

The impact of cultural practice and policy on dementia care in Nepal

BackgroundPeople’s wider culture plays a vital role in both dementia care and policy. This study aims to explore the cultural practice and policy influence around caring for People Living with Dementia (PLWD) in Nepal.MethodsAn exploratory qualitative study was designed to investigate dementia care in Nepal. The study comprised four in-depth interviews and four focus group discussions with 29 participants, including family members, health care professionals, and other stakeholders. Data were analysed using thematic analysis.ResultFour major themes (each with several sub-themes) were identified: (1) Cultural practice in dementia care; (2) Impact of policy on the dementia care; (3) Service provision; and (4) Education and training.ConclusionThere is a need for community-based awareness raising on dementia and its care, to sensitise all relevant stakeholders to meet the needs of PLWD. In addition, capacity building of health workforce is needed to enhance their knowledge of and skills in providing culturally appropriate dementia care.

Utilising a Co-Design Approach to Strategically Plan Dementia Education for Diverse Populations in Ireland

Abstract Background In Ireland, the number of people living with dementia is projected to treble by 2050. National dementia education programmes span all care groups and areas of work, and include a 4-hour, a 2-day programme and HSEland modules. However, there is concern that these programmes often adopt a pedagogical approach that does not meet the needs of modern learners. Adopting a coproduction approach in designing dementia education initiatives is essential to ensuring that these programmes effectively impact healthcare professional’s attitudes, beliefs and care practices, meeting the needs of people from diverse populations and cultural backgrounds. Methods Methods included three key components: Firstly, a dementia education online survey for facilitators of national programmes to ascertain the benefits, challenges and impact on care practices. Secondly, a national event using World Café methodology to share insights and ideas and co-produce a vision for advancing dementia education in Ireland. Primary stakeholders included individuals living with dementia, their advocates, and delegates from various demographics and cultural backgrounds. Thirdly, a review of literature relating to dementia education in other jurisdictions. Results Key themes that emerged include the significance of understanding the lived experience and recognising diversity and cultural differences. Additionally, there is a need to explore various teaching and delivery methods, such as incorporating technology, simulation, and a tiered approach. There was general agreement that co designing a more adaptable, interactive national programme, including the lived experience of people with dementia would be more impactful. Challenges identified include staff turnover, difficulties releasing staff from clinical areas and organisational culture. Conclusion Through establishing an inclusive and collaborative platform, we can collectively shape a future where dementia education and care practices are compassionate, rights based and supportive. Crucially, people living with dementia and their supporters are at the heart of planning and decision-making processes in co-designing dementia education initiatives.

Curricular initiatives for dementia education

ABSTRACT Dementia education can be an effective pedagogical tool to improve student perceptions of dementia and dementia care. In this article, we describe four evidence-based educational initiatives implemented in an undergraduate and graduate level social work course. Students participated in an informational presentation on dementia, a dementia simulation, and a virtual discussion board. They also conducted an interview with a person living with dementia and their caregiver. Twenty-nine students completed a pre- and postsurvey on their (a) prior contact with individual(s) living with dementia, (b) dementia-related knowledge, attitudes, and self-efficacy, and (c) willingness to support individuals living with dementia, and 43 students participated in a focus group. Comparison of pre- and post-participation scores indicated improvements in knowledge, attitude, and self-efficacy. Content analyses of focus group responses and discussion posts generated themes that shed light on students’ (a) knowledge gains at cognitive and affective levels, (b) attitudes toward future practice in dementia care, (c) perceived value of interprofessional practice, and (d) perceptions of dementia related learning activities. Despite limitations in implementation and evaluation, the curricular initiatives provide a template to train future health professionals in dementia care, a vital area of practice.

Reimagining neuroscientific and andragogical principles for dementia care education.

This article aims to explore the integration of Louis Cozolino's (2013) andragogical strategies with the tenets of person-centered dementia care practices to enhance dementia care education. The article examines the multiple dimensions of learning in adulthood, highlighting the role of neural plasticity and lifelong brain adaptation in shaping learning and experiential strategies. This in-depth evaluation underscores the significance of tailoring andragogical approaches to the needs of adult learners, who, in this context, are care providers for persons with dementia. This is done through proper understanding of the neurobiological realities and the unique learning needs of adults. Such tailored approaches can be aligned with the brain's adaptive nature by recognizing the intricate interplay of cognitive, emotional, and social dimensions. Highlighting the need for including lessons on the person-centered approach in dementia care education, the paper argues that adult learners - who are essentially part of the dementia care workforce - first need to learn, appreciate, and embrace the approach before applying it in their caregiving practices. This article presents an overarching argument that integration of Cozolino's principles of adult learning with tenets of person-centered dementia care could provide a robust framework for dementia care education.

Ready or Not: A Conceptual Model of Organizational Readiness for Embedded Pragmatic Dementia Research.

The National Institute on Aging Alzheimer's Disease/Alzheimer's Disease and Related Dementias Research Implementation Milestones emphasize the need for implementation research that maximizes up-take and scale-up of evidence-based dementia care practices across settings, diverse populations, and disease trajectories. Organizational readiness for implementation is a salient consideration when planning and conducting embedded pragmatic trials, in which interventions are implemented by provider staff. The current article examines the conceptual and theoretical underpinnings of organizational readiness for implementation and the operationalization of this construct. We offer a preliminary conceptual model for explicating and measuring organizational readiness and describe the unique characteristics and demands of implementing evidence-based interventions targeting persons with dementia and/or their care partners. [Research in Gerontological Nursing, 17(3), 149-160.].

Commentary: Aging Places: A Review Essay

This Commentary reflects on the convergence of social and geographical gerontology as presented in two books addressing place and aging with and without dementia. The two books are expansive in scope, exploring aging and dementia research and care practices globally, with an emphasis on English-language settings and resources. Drawing on my own work that addresses the significance of place and living with dementia (i.e., McGovern 2016) and on personal experiences with the place-making practices of both my parents, this Commentary provides an overview of each text and concludes by stressing the need for deepening understanding of the experience and impact of place and environment as we age.

‘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.

Nursing students' perceptions and attitudes towards dementia care in Namibia.

Dementia is a significant public health concern and a leading cause of disability and dependency among elderly individuals globally. However, there is currently limited research examining the perceptions and attitudes of healthcare providers, including nursing students, in Namibia. This study aimed to examine nursing students' perceptions and attitudes of caring for patients with dementia. The study was conducted at two university campuses in Namibia. A quantitative correlational design was employed to conveniently recruit 196 third- and fourth-year nursing students between April and August 2023, utilising the Geriatric In-Hospital Nursing Care Questionnaire (GerINCQ) online survey. Data were analysed using SPSSv28 for descriptive and inferential statistics. The perception score ranged from 2.26 to 2.43, indicating negative attitudes and perceptions towards dementia care. The highest mean perception of 2.43 (95% CI = 2.3-2.55) was on reacting to challenging behaviour and the lowest was on professional responsibility 2.26 (95% CI = 2.12-2.4). Correlations were observed between age and performed interventions (r = 0.66; p = 0.01) and gender and dementia-sensitive care (r = 0.52; p = 0.01). The study revealed unfavourable attitudes and perceptions towards dementia care among nursing students, contrary to the optimistic anticipation. The results highlight the urgent need to develop and integrate dementia care strategies and practices into nursing education curricula. This study provides valuable data for informing quality assurance initiatives aimed at improving nursing training in dementia care.

From the Italian National Dementia Plan to the Dementia Friendly Communities

This article explores various aspects related to dementia care and support in Italy. It begins by discussing the National Dementia Plan of Italy, highlighting its goals and initiatives. It then focuses on the Veneto Region and their innovative approach to supporting people with dementia through the implementation of the Dementia Map, an online support system. The article also highlights the importance of dissemination publications in raising awareness and sharing knowledge about dementia care practices. Furthermore, it delves into the pilot project of Abbiategrasso, the first Dementia Friendly City in Italy, showcasing the efforts made to create a community that is inclusive and supportive of individuals with dementia. The experiences and lessons learned from this project serve as valuable insights for other communities aiming to become dementia friendly. In conclusion, the article emphasizes the significance of collaborative efforts, innovative approaches, and community engagement in improving the lives of individuals with dementia and their caregivers. It underlines the importance of continuous advancements in dementia care and the need for ongoing support systems to meet the evolving needs of those affected. The bibliography provides a list of relevant sources and references that further explore the topics covered in the article.

EXPLORING THE EVERYDAY EXPERIENCES OF FAMILY CAREGIVERS OF PEOPLE LIVING WITH DEMENTIA: A LONGITUDINAL DIARY STUDY

Abstract People living with dementia rely largely on the support of unpaid family caregivers to remain living at home in the community. The strain created by this dependence is evidenced by high rates of distress among caregivers of people living with dementia and underscores the importance of access to appropriate formal and informal supports for this group. Providing tailored and meaningful supports and services to families requires a good understanding of the multidimensional and dynamic nature of the caregiving experience. Our study employed longitudinal qualitative methodology to understand how caregivers of people living with dementia were experiencing progression of the disease and shifting support needs over a two year-period. Fourteen family caregivers in British Columbia, Canada, wrote monthly diaries reflecting on their experience of caregiving and navigating supports. Thematic analysis of 137 diary entries shed light on different facets of caregiving experience, including psychological and emotional challenges (e.g., feeling overwhelmed, lacking a sense of control, trouble maintaining sense of self) and difficulties navigating formal care and supports (e.g., lack of access to services and information, lack of flexibility in service delivery). However, accounts also reflected participants’ resilience, through a range of coping strategies adopted to resolve problems encountered in caregiving, drawing on emotional and practical support from family, friends, and community. The diaries offer critical perspectives on gaps and inadequacies in formal supports for family caregivers and opportunities to better support the health and wellness of caregivers and recipients through dementia care policy and practice.

DEVELOPMENT AND TESTING OF THE PC-MET (PERSON-CENTERED MEASURE EVALUATION TOOL)

Abstract Despite the importance of person-centered measurement -- and that numerous research instruments are now available to measure person-centeredness -- there are no tools to evaluate the extent to which existing research instruments themselves are developed consistent with principles of person-centeredness. The PC-MET (Person-Centered Measure Evaluation Tool) was developed to fill that gap. Based on literature and theory, the PC-MET assesses the process of instrument development and the content of the instrument itself based on six overarching criteria of person-centeredness: co-creation, accommodation, incorporation, biopsychosocial-cultural components, pragmatism, and systemic focus. The inter-rater reliability of the PC-MET was evaluated based on instruments recommended for use in relation to the Alzheimer’s Association 2018 Dementia Care Practice Recommendations (DCPR). Independent raters evaluated two measures within each DCPR area using the PC-MET. Agreement was excellent (kappas>0.81) across all PC-MET criteria with the exception of the criteria assessing biopsychosocial-cultural components (where agreement was moderate; kappa=0.42) and pragmatism (where agreement was substantial; kappa=0.68). Raters provided feedback on the PC-MET and agreed or strongly agreed that the tool is easy to understand and score; the six PC-MET criteria are relevant and complete; and the PC-MET could improve the person-centeredness of dementia measurement instruments. The PC-MET has broad potential use, including to critique the extent to which existing instruments are person-centered, to promote efforts to make existing measures more person-centered, and to inform the development of new person-centered measures. This work was supported by the NIA through a grant to the Alzheimer’s Association and by the LINC-AD Research Steering Committee.

EVALUATION OF DEMENTIA EDUCATION TRAINING IN GEORGIA NURSING HOMES

Abstract The increased use and misuse of antipsychotics and psychotropics in nursing homes have been well documented. Person-centered dementia care training that addresses skill development and practice change around communication strategies and non-pharmacologic approaches has the potential to impact the misuse of these drugs as chemical restraints. The goal of this study is to implement and evaluate an online team-based dementia education (Dementia Beyond Drugs: Changing the Culture of Care) program aimed at skill development and practice change. The program was delivered online over six weeks to teams of nursing home staff for a total of 12 hours of synchronous interactive learning. Teams were also assigned application exercises between meetings. Topics included “dementia, dementia beyond drugs, interpersonal approaches, and understanding personal expressions.” This study implemented the training with staff teams from 22 nursing homes in Georgia (N=97). Pre-post data analysis reveals a significant improvement in the nursing home environment and relationships as measured by the Kansas Culture Change Instrument, and increased attention to the use of antipsychotic drugs in staff meetings. This study indicates that team-based online learning has the potential to improve person-centered dementia care practices and attention to the use of non-pharmacological approaches to address behavioral expressions of residents living with dementia. Future research is needed to expand person-centered dementia care education programs to more nursing homes and evaluate their short and long-term effectiveness.

Dementia and comorbidities in primary care: a scoping review

BackgroundPeople with dementia (PwD) are known to have more chronic conditions compared to those without dementia, which can impact the clinical presentation of dementia, complicate clinical management and reduce overall quality of life. While primary care providers (PCPs) are integral to dementia care, it is currently unclear how PCPs adapt dementia care practices to account for comorbidities. This scoping review maps recent literature that describes the role for PCPs in the prevention, detection/diagnosis and management of dementia in the context of comorbidities, identifies critical knowledge gaps and proposes potential avenues for future research.MethodsWe searched for peer-reviewed literature published between 2017–2022 in MEDLINE, Cochrane Library, and Scopus using key terms related to dementia, primary care, and comorbidity. The literature was screened for relevance by title-abstract screening and subsequent full-text screening. The prioritized papers were categorized as either ‘Risk Assessment and Prevention’, ‘Screening, Detection, and Diagnosis’ or ‘Management’ and were further labelled as either ‘Tools and Technologies’, ‘Recommendations for Clinical Practice’ or ‘Programs and Initiatives’. ResultsWe identified 1,058 unique records in our search and respectively excluded 800 and 230 publications during title-abstract and full-text screening. Twenty-eight articles were included in our review, where ~ 50% describe the development and testing of tools and technologies that use pre-existing conditions to assess dementia risk. Only one publication provides official dementia screening guidelines for PCPs in people with pre-existing conditions. About 30% of the articles discuss managing the care of PwD, where most were anchored around models of multidisciplinary care and mitigating potentially inappropriate prescribing. ConclusionTo our knowledge, this is the first scoping review that examines the role for PCPs in the prevention, detection/diagnosis and management of dementia in the context of comorbidities. Given our findings, we recommend that future studies: 1) further validate tools for risk assessment, timely detection and diagnosis that incorporate other health conditions; 2) provide additional guidance into how comorbidities could impact dementia care (including prescribing medication) in primary care settings; 3) incorporate comorbidities into primary care quality indicators for dementia; and 4) explore how to best incorporate dementia and comorbidities into models/frameworks of holistic, person-centred care.

Investing in hope in dementia care practice: What do we need to consider?

AbstractAlthough most countries have ratified the United Nations Convention on the Rights of Persons with Disabilities, only a quarter have a national dementia plan which outlines a strategy to support People Living with Dementia (PLWD) and their families. Majority of PLWD reside in low‐and‐middle‐income countries where the numbers are expected to increase disproportionately over the coming decades. Healthcare systems in these regions are already overburdened, and resources for dementia are often inaccessible or unaffordable for most of the population. Factors like low public awareness, misconceptions about early symptoms being a natural part of aging and societal stigma also contribute to delays in diagnosis and hesitancy in help seeking.However, a recent Alzheimer’s Disease International report highlights that challenges in dementia care are not limited to low resource settings, and up to an astounding 85% of PLWD worldwide may not receive post‐diagnostic support. Research using paradigms like patient public involvement have highlighted how PLWD and their families often feel devalued as dementia has ‘no‐cure,’ drawing attention to experiences which have made them feel unsupported during interactions with health systems. Globally, the majority of dementia care is actually provided at home and by family members until a stage where institutional care is possible in settings where these resources exist. This highlights the importance of interventions which can support at‐home care, particularly since home care has also been shown to be a more cost effective model when compared to institutional care. Along with building public awareness and making society more dementia inclusive, training of healthcare professionals is also required for more hopeful communication. Using the value of hope can extend support to PWLD and their families by encouraging meaningful engagement within the family context and encouraging PLWD to continue participating in socially enriching activities.Whilst endeavors to find a cure for dementia must continue, greater investment is required in interventions that instill realistic hope in PLWD and empower their families to provide care within the community. These interventions play a critical role in reducing the negative impact that social withdrawal and social isolation can have on the well‐being of PWLD and their families.

World Alzheimer Report 2022 ‐ How strong are global health systems: Lessons learned and case studies from across the globe

AbstractBackgroundEach year Alzheimer’s Disease International (ADI) publishes a World Alzheimer Report, a comprehensive source of global health and socioeconomic information on dementia. The theme of ADI’s 2022 World Alzheimer Report was post‐diagnostic support ‐ aiming to provide a global perspective on treatment, care and support models, barriers to access and areas of best practice, and the role of policy in strengthening health systems.MethodWe conducted 3 global surveys; with people living with dementia in 41 countries, informal carers across 68 countries, and health & long‐term care professionals in 69 countries. 215 global experts contributed 119 expert essay and case studies. We also highlighted commentary and perspectives from people living with dementia and carers.ResultKey themes include a lack of access to post‐diagnostic support which impacted well‐being and health outcomes of families and professionals. 45% of people with dementia in lower‐ and middle‐income countries (LMICs) and 37% in high‐income countries (HICs) said they had not been offered support after their diagnosis. 66% of people with dementia did not have a personalised care plan. 54% of informal carers and 37% of professionals reported being stressed often or all the time. Case studies indicated stigma remains a major barrier and that care pathways are not clear or integrated – and often not culturally appropriate to ensure proper access to treatment and care. Carers and professionals expressed the need for better education and training. There were also areas of best practice to share.ConclusionHealth and long‐term care systems must be strengthened in order to provide treatment, care and support of people living with dementia and their carers. National dementia plans provide a framework, but don’t always guarantee access. Stigma must be challenged and person‐centred care that is culturally appropriate, gender inclusive, coordinated and accessible must become the norm. Support for carers must be prioritised and education and training must be improved and expanded. There are radical differences both between and within countries in education, acculturation, access to services, family responsibilities, and ability to mobilise resources. Understanding how these differences shape dementia care practice is crucial for developing appropriate dementia care policies.

How to attune to spiritual sources of strength of people with mild to moderate dementia

ABSTRACT People with mild to moderate dementia often struggle with disorienting and alienating effects of the disease. Being attuned to spiritual sources of strength has been shown to be helpful in facing these challenges. In current dementia care practice and literature however, not enough attention is paid to fostering this type of connection. Our research offers a first overview of spiritual strength attunement in dementia. Results make clear how dementia impacts people spiritually, what the properties are of strength attunement and how professional caregivers foster this type of attunement with their clients. Insights are summarized in an integrated model.

Dementia care practices among community healthcare workers in Vietnam: a qualitative descriptive study

BackgroundVietnam is one of the most rapidly aging countries in the world and the likelihood that someone may have dementia rises dramatically as the population ages. Although caring for persons living with dementia is important, little is known about the circumstances under which community healthcare professionals in Vietnam provide dementia care. This study aimed to describe the practice of caring for persons with dementia among community healthcare professionals in Vietnam.MethodsThis qualitative descriptive study was conducted with 23 community healthcare professionals recruited from 10 primary healthcare centers, representing 10 of 24 districts in Ho Chi Minh City, Vietnam. Participants were physicians (n = 11), physician’s assistants (n = 8) and community nurses (n = 4). Data were collected through in-depth face-to-face semi-structured interviews. Interview data were audio recorded, transcribed verbatim, and analyzed using content analysis.ResultsThe mean age of the 23 participants was 44.6 ± 8.8 years; most were female (n = 16, 69.6%); and the mean time of working in the field of dementia care was 15.9 ± 8.4 years. Analysis of the interview data revealed five categories, which informed how care was provided: 1) Knowledge about dementia and its prevalence among older adults; 2) Identification of dementia in Vietnam; 3) Lack of attention to early diagnosis of dementia and difficulty in providing continuous care; 4) Dependence on family members for prompt and continuous care; and 5) challenges to providing dementia care. Despite having knowledge about dementia, some healthcare professionals incorrectly viewed dementia as an inevitable part of the ageing process. Participants reported that their limited training and practical experience in caring for persons with dementia caused a lack of confidence in dementia care.ConclusionsThe quality of care provided to persons living with dementia was negatively impacted by the limited training of healthcare personnel. The diagnosis, treatment, and provision of supportive services to persons living with dementia and their families are substantial challenges for the Vietnamese healthcare system. It is crucial to initiate and cultivate dementia care education programs aimed at expanding curricula for physicians, physicians’ assistants, and nurses.