Journal articles on the topic 'Dementia care accessibility'
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Pierse, Tom, John Cullinan, Fiona Keogh, and Eamon O'Shea. "159 Geographic Accessibility and Capacity of Day Care Services for People with Dementia." Age and Ageing 48, Supplement_3 (September 2019): iii17—iii65. http://dx.doi.org/10.1093/ageing/afz103.93.
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Abstract Background Day care is an important service for some people with dementia and their carers. In Ireland, day care services for people with dementia are delivered by a mix of dementia specific day-care centres and generic centres that cater for people with dementia to various degrees. In this paper we map the geographic variation in the supply of day care services for people with dementia relative to potential need. Methods Using a national HSE survey of day care centres, we estimate the current supply of day care services for people with dementia in both generic and dementia specific centres by combining a number of qualitative and quantitative measures. To identify the variation in supply, we map day care provision at local and regional levels to the number of people with dementia in the area. To consider geographic accessibility, we map and analyse the population living outside the catchment area of the day care centres. Results There is significant variation across the country in the existing capacity of day care centres to cater for people with dementia. The number of places per 100 persons with dementia varies from 9 to 16 across the Community Health Organisation areas. We show that 20 per cent of people with dementia are not living within a 15km radius of a day care centre that caters for people with dementia. Conclusion Day care has a place in the menu of service for people with dementia living in the community. As the number of people with dementia grows, investment in day care centres needs to be targeted to areas of greatest need. In many parts of the country, the current day care centres have limited capacity to provide a service for people with dementia that live in their catchment area. There is considerable geographical inequity in day care provision for people with dementia across the country.
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de Mendonça Lima, C. A. "Diagnosis and differential diagnosis of dementia." European Psychiatry 26, S2 (March 2011): 2108. http://dx.doi.org/10.1016/s0924-9338(11)73811-1.
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The European prevalence of dementias will increase of 40% during the next 40 years, with serious effects on families, communities and healthcare systems (1).A correct diagnosis of dementia is the first step to plan treatment, care and support. There is no single test to identify the cause of dementia. The diagnostic process involves, medical history, mental status exam, physical exam, laboratory tests, psychiatric and (neuro)psychological tests and assessment of individual's functioning. An image of brain is suitable.There is an idea that this diagnostic process can only be realized by highly specialized staff. WHO has recently published the mhGAP Intervention Guide for use in non-specialized health-care settings by health-care providers working at first- and second-level facilities. It includes guidance on evidence-based interventions to make the diagnosis and manage a number of priority conditions, including dementia (2).The recent progress in pathological process understanding of Alzheimer's disease (AD), may help to the proposal of new research criteria that reconceptualise the diagnosis around both a specific pattern of cognitive changes and structural/biological evidence of Alzheimer's pathology (3).These two recent developments are significant contributions to increase the accessibility to a proper diagnosis and care of dementia around the world.
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Szcześniak, Dorota, Rose-Marie Dröes, Franka Meiland, Dawn Brooker, Elisabetta Farina, Rabih Chattat, Shirley B. Evans, et al. "Does the community-based combined Meeting Center Support Programme (MCSP) make the pathway to day-care activities easier for people living with dementia? A comparison before and after implementation of MCSP in three European countries." International Psychogeriatrics 30, no. 11 (February 13, 2018): 1717–34. http://dx.doi.org/10.1017/s1041610217002885.
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ABSTRACTBackground:The “pathway to care” concept offers a helpful framework for preparing national dementia plans and strategies and provides a structure to explore the availability and accessibility of timely and effective care for people with dementia and support for their informal carers. Within the framework of the JPND-MEETINGDEM implementation project the pathways to regular day-care activities and the Meeting Centers Support Programme (MCSP), an innovative combined support form for people with dementia and carers, was explored.Methods:An exploratory, descriptive, qualitative, cross-country design was applied to investigate the pathways to day care in several regions in four European countries (Italy, Poland, United Kingdom, and the Netherlands).Results:Before implementation of MCSP, of the four countries the United Kingdom had the most structured pathway to post-diagnostic support for people with dementia. MCSP introduction had a positive impact on the pathways to day-care activities in all countries. MCSP filled an important gap in post-diagnostic care, increasing the accessibility to support for both people with dementia and carers. Key elements such as program of activities, target group, and collaboration between healthcare and social services were recognized as success factors.Conclusions:This study shows that MCSP fills (part of) the gap between diagnosis and residential care and can therefore be seen as a pillar of post-diagnostic care and support. Further dissemination of Meeting Centers in Europe may have a multiple impact on the structure of dementia services in European countries and the pathways to day care for people with dementia and their carer(s).
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Rosli, Roshaslina, Michaela Goodson, Maw Pin Tan, Devi Mohan, Daniel Reidpath, Pascal Allotey, Shahrul Kamaruzzaman, Ai-Vyrn Chin, and Louise Robinson. "Challenges and Research Priorities for Dementia Care in Malaysia from the Perspective of Health and Allied Health Professionals." International Journal of Environmental Research and Public Health 18, no. 21 (October 20, 2021): 11010. http://dx.doi.org/10.3390/ijerph182111010.
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Few studies to date have evaluated dementia care in Malaysia, and the focus of studies has primarily been on epidemiological and laboratory research. In this study, we aimed to identify potential challenges for the delivery of dementia care in Malaysia and priorities for research and enhancing existing dementia care. This study used thematic analysis to evaluate the open and focus group workshop discussions guided by semi-structured questions. Triangulation of the collected data (sticky notes, collated field notes, and transcripts of discussions) was achieved through stakeholder consensus agreement during a workshop held in 2017. Five main themes as priorities for dementia care were identified: (1) availability of a valued multi-disciplinary care service, (2) accessibility of training to provide awareness, (3) the functionality of the governance in establishing regulation and policy to empower care services, (4) perceived availability and accessibility of research data, and (5) influence of cultural uniqueness. The findings of this study seek to enhance existing dementia care in Malaysia but have potential application for other low and middle-income countries with a similar social and health care set up. The constructed relationship between themes also tries to tackle the challenges in a more efficient and effective manner, as none of these aforementioned issues are standalone challenges. In addition, we demonstrated how a carefully constructed workshop with defined aims and objectives can provide a useful analysis tool to evaluate health and social care challenges in a multidisciplinary forum.
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Moon, Sungje, Mankyu Choi, and Minsung Sohn. "Suicide among Older Adults with Dementia: Effects of Korea’s Long-Term Care Insurance System." International Journal of Environmental Research and Public Health 18, no. 12 (June 18, 2021): 6582. http://dx.doi.org/10.3390/ijerph18126582.
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South Korea recently expanded its coverage rate of long-term care insurance (LTCI) by adding a “dementia special grade” in 2014 to improve care service accessibility and extend health life for older adults with dementia. In this study, we propose a multifaceted policy to reduce the suicide risk among older adults with dementia by evaluating the effectiveness of using the long-term care services (LTCS). A sample of 62,282 older adults was selected from the “Older Adults Cohort DB” of the National Health Insurance Service. We conducted Kaplan–Meier and Cox regression to represent the yearly survival curve from 2002 to 2015 according to the individual characteristics. Difference-in-difference estimation was conducted to identify the effect of LTCS on suicide rates by using LTCS before and after 2014. The suicide risk of older adults using LTCS was about 0.256-times lower than those who did not use it (OR = 0.296, 95% CI = 0.183–0.478), whereas it increased after the expansion of the dementia grading (OR = 2.131, 95% CI = 1.061–4.280). To prevent the risk of suicide among older adults with dementia, not only did the mortality rate vary depending on the sex, activities of daily living (ADL), and type of caregiver at the individual level but appropriate national intervention and management, such as improving the accessibility of LTCS, are also needed.
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Smriti, Diva, Rose Ann DiMaria-Ghalili, Laura Gitlin, Aleksandra Sarcevic, Erjia Yan, and Jina Huh-Yoo. "Information Quality Assessment Framework for Online Dementia Care Resources." Innovation in Aging 4, Supplement_1 (December 1, 2020): 823. http://dx.doi.org/10.1093/geroni/igaa057.3003.
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Abstract Persons with dementia and caregivers can benefit from online resources. The quality and accessibility of these resources, however, can vary. We present work on the Information Quality Framework for Online Dementia Care Resources. To develop the framework, we first empirically examine resources being retrieved with query terms developed with a medical librarian. Searching one of the possible keyword combinations related to living with dementia on Google “Alzheimer AND financial planning” returned 18,900,000 results. Among the top 13 results on the first page of the search results, six were websites of government or non-profit organizations, four were for-profit companies, and three were advertisements. Out of eight unique organizations and companies, two provided support through online communities, but only one is active. The next steps include developing systematic ways to evaluate the credibility and accuracy of these resources, and search and test broader topics of dementia care resources online.
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Duran-Kiraç, Gözde, Özgül Uysal-Bozkir, Ronald Uittenbroek, Hein van Hout, and Marjolein I. Broese van Groenou. "Accessibility of health care experienced by persons with dementia from ethnic minority groups and formal and informal caregivers: A scoping review of European literature." Dementia 21, no. 2 (December 8, 2021): 677–700. http://dx.doi.org/10.1177/14713012211055307.
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The number of persons with dementia from ethnic minority backgrounds is increasing. However, ethnic minority groups use health care services less frequently compared to the general population. We conducted a scoping review and used the theoretical framework developed by Levesque to provide an overview of the literature concerning access to health care for ethnic minority people with dementia and (in)formal caregivers. Studies mentioned barriers in (1) the ability to perceive a need for care in terms of health literacy, health beliefs and trust, and expectations; (2) the ability to seek care because of personal and social values and the lack of knowledge regarding health care options; and (3) lack of person-centered care as barrier to continue with professional health care. Studies also mentioned barriers experienced by professionals in (1) communication with ethnic minorities and knowledge about available resources for professionals; (2) cultural and social factors influencing the professionals’ attitudes towards ethnic minorities; and (3) the appropriateness of care and lacking competencies to work with people with dementia from ethnic minority groups and informal caregivers. By addressing health literacy including knowledge about the causes of dementia, people with dementia from ethnic minorities and their informal caregivers may improve their abilities to access health care. Health care professionals need to strengthen their competencies in order to facilitate access to health care for this group.
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Dong, Weizhen. "Adult Day Programs in the New Reality of High Prevalence of Dementia-with A Toronto Case Study." European Journal of Medical and Health Sciences 4, no. 1 (February 10, 2022): 27–34. http://dx.doi.org/10.24018/ejmed.2022.4.1.1206.
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Objectives: Adult Day Programs (ADPs) have been playing an important role providing services to community dwelling elders and their families in health-related prevention, intervention, and family caregiver support. At the time when there is a high prevalence of dementia among older elders, demand for such services will grow. Learn the experiences of ADPs can help identifying service gaps, which are crucial for developing measures to improve such programs’ effectiveness. Methods: This is a case study on the ADPs at the Toronto Geriatric Centre with qualitative research strategy. Interviews and focus group discussions were the data collection methods employed to gather feedbacks from its staff members, clients, and family caregivers. Results: The ADPs at the TGC are helpful to their clients and their families, but have issues in language accessibility, physical accessibility (programs’ schedule and transportation), financial accessibility (affordability), and care accessibility-there is a lack of professional caregivers for those participants who need onsite care. Discussion: The high prevalence of dementia among ADPs’ clients and the resource shortage are the main difficulties facing the TGC. If it was to achieve its intended goal, more resources are needed for their improvements in accessibility, which would involve a user-friendly operation schedule, free or minor-cost transportation, and sufficient program staffing that include professional caregivers. Covid-19 pandemic poses challenges to the entire eldercare sector. ADPs’ post-pandemic arrangements should address emerging needs of the elders they serve. Community elders, especially those persons with dementia, and their families need ADPs for aging at home.
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Masoud, Sara, Carole White, Ashlie Glassner, Shanae Rhodes, Mayra Mendoza, and Kylie Meyer. "THE IMPACT OF THE COVID-19 PANDEMIC ON DEMENTIA CARE: A MULTISTAKEHOLDER PERSPECTIVE." Innovation in Aging 6, Supplement_1 (November 1, 2022): 119. http://dx.doi.org/10.1093/geroni/igac059.475.
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Abstract Persons living with dementia (PLWD) and family caregivers are particularly vulnerable to the effects of the COVID-19 pandemic. A multi-methods study was conducted to describe the impact of the pandemic on dementia care from the perspectives of stakeholders, including PLWD, family caregivers, and health and social care professionals (HCPs).The study was conducted using a community engaged approach. Cross-sectional surveys were conducted with PLWD (n=27), family caregivers (n=161), and HCPs (n=77), followed by focus groups and interviews with a sub-sample of survey participants (n=55). Participants reported declines in health and quality of life for PLWD and family caregivers. Participants experienced delayed or cancelled dementia care attributed to the pandemic. Most reported telehealth and tele-support were effective alternative models to care. The pandemic impacted the quality and accessibility of dementia care. Results highlight opportunities to improve quality of care through addressing inequities and identifying approaches to address isolation and virtual care.
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Ng, Natalie Su Quin, and Stephanie Alison Ward. "Diagnosis of dementia in Australia: a narrative review of services and models of care." Australian Health Review 43, no. 4 (2019): 415. http://dx.doi.org/10.1071/ah17167.
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Objective There is an impetus for the timely diagnosis of dementia to enable optimal management of patients, carers and government resources. This is of growing importance in the setting of a rising prevalence of dementia in an aging population. The Australian Clinical Practice Guidelines and Principles of Care for People with Dementia advocate referral to comprehensive memory services for dementia diagnosis, but in practice many patients may be diagnosed in other settings. The aim of the present study was to obtain evidence of the roles, effectiveness, limitations and accessibility of current settings and services available for dementia diagnosis in Australia. Methods A literature review was performed by searching Ovid MEDLINE using the terms ‘dementia’ AND ‘diagnosis OR detection’. In addition, articles from pertinent sources, such as Australian government reports and relevant websites (e.g. Dementia Australia) were included in the review. Results Literature was found for dementia diagnosis across general practice, hospitals, memory clinics, specialists, community, care institutions and new models. General practitioners are patients’ preferred health professionals when dealing with dementia, but gaps in symptom recognition and initiation of cognitive testing lead to underdiagnosis. Hospitals are opportunistic places for dementia screening, but time constraints and acute medical issues hinder efficient dementia diagnosis. Memory clinics offer access to multidisciplinary skills, demonstrate earlier dementia diagnosis and potential cost-effectiveness, but are disadvantaged by organisational complexities. Specialists have increased confidence in diagnosing dementia than generalists, but drawbacks include long wait lists. Aged care assessment teams (ACAT) are a potential service for dementia diagnosis in the community. A multidisciplinary model for dementia diagnosis in care institutions is potentially beneficial, but is time and cost intensive. New models with technology allow dementia diagnosis in rural regions. Conclusion Memory clinics are most effective for formal dementia diagnosis, but healthcare professionals in other settings play vital roles in recognising patients with dementia and initiating investigations and referrals to appropriate services. What is known about this topic? Delays in dementia diagnosis are common, and it is unclear where majority of patients receive a diagnosis of dementia in Australia. While the Australian Clinical Practice Guidelines and Principles of Care for People with Dementia advocate referrals to services such as memory clinics for comprehensive assessment and diagnosis of dementia, such services may have limited capacity and may not be readily accessible to all. What does this paper add? This paper presents an overview of the various settings and services available for dementia diagnosis in Australia including evidence of the roles, accessibility, effectiveness and limitations of each setting. What are the implications for practitioners? This concerns a disease that is highly prevalent and escalating, and highlights the roles for practitioners in various settings including general practices, acute hospitals, specialist clinics, community and nursing homes. In particular, it discusses the potential roles, advantages and challenges of dementia diagnosis in each setting.
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Barrett, Julie, Simon Evans, and Neil Mapes. "Green dementia care in accommodation and care settings: a literature review." Housing, Care and Support 22, no. 4 (December 5, 2019): 193–206. http://dx.doi.org/10.1108/hcs-04-2019-0010.
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Purpose The purpose of this paper is to examine the recent evidence relating to green (nature-based) dementia care for people living with dementia in long-term accommodation and care settings (housing for older people that provides both accommodation and care, such as residential care homes, nursing homes and extra care housing schemes). The review formed part of a pilot study exploring interaction with nature for people living with dementia in care homes and extra care housing schemes in the UK. Rather than a comprehensive systematic or critical literature review, the intention was to increase understanding of green dementia care to support the pilot study. Design/methodology/approach The review draws together the published and grey literature on the impacts of green (nature-based) dementia care, the barriers and enablers and good practice in provision. People living with dementia in accommodation and care settings are the focus of this review, due to the research study of which the review is part. Evidence relating to the impacts of engaging with nature on people in general, older people and residents in accommodation and care is also briefly examined as it has a bearing on people living with dementia. Findings Although interaction with the natural environment may not guarantee sustained wellbeing for all people living with dementia, there is some compelling evidence for a number of health and wellbeing benefits for many. However, there is a clear need for more large-scale rigorous research in this area, particularly with reference to health and wellbeing outcomes for people living with dementia in accommodation and care settings for which the evidence is limited. There is a stronger evidence base on barriers and enablers to accessing nature for people living with dementia in such settings. Research limitations/implications The literature review was conducted to support a pilot study exploring green (nature-based) dementia care in care homes and extra care housing schemes in the UK. Consequently, the focus of the review was on green dementia care in accommodation and care settings. The study, and thus the review, also focussed on direct contact with nature (whether that occurs outdoors or indoors) rather than indirect contact (e.g. viewing nature in a photograph, on a TV screen or through a window) or simulated nature (e.g. robot pets). Therefore, this paper is not a full review of all aspects of green dementia care. Originality/value This paper presents an up-to-date review of literature relating to green dementia care in accommodation and care settings. It was successful in increasing understanding to support a pilot study exploring opportunities, benefits, barriers and enablers to interaction with nature for people living with dementia in care homes and extra care housing schemes in the UK. It demonstrated the impacts, value and accessibility of nature engagement in these settings and identified gaps in the evidence base. This review and subsequent pilot study provide a strong platform from which to conduct future research exploring green dementia care in accommodation and care settings.
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Yen, Chia-Feng, and Shyang-Woei Lin. "Justice in Dementia Care Resource Allocation: How Should We Plan for Dementia Services?" International Journal of Environmental Research and Public Health 16, no. 10 (May 17, 2019): 1754. http://dx.doi.org/10.3390/ijerph16101754.
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Dementia care resources in Taiwan have not been allocated taking into account patients’ needs and the distance between service users and providers. The objective of this study was to use two newly developed indicators; profit willing distance (PWD) and tolerance limited distance (TLD), to profile the service availability and accessibility of the 22 administrative areas in Taiwan and facilitate justice-based resource allocation by the central government. The study employed secondary data analysis by using a geographic information system (GIS) and geocoding to identify distances between service users and providers. The study samples were drawn from the databank of the National Disability Eligibility Determination System and grouped by the acuteness of registrants’ needs. Both the PWD and TLD were found in 15 of the administrative areas, and neither was found in three areas (Penghu, Kinmen, and Lienchiang County). Either the PWD or TLD (but not both) were found in four areas (only have PWD: Hsinchu and Chiayi City; only have TLD: Yunlin and Taitung County). How the priorities should be set for dementia service allocation based on these findings was also addressed. We conclude that the indicators of PWD and TLD can add value to the policy decision-making process, help set priorities, and facilitate efficient and fair resource allocation by defining specifics of the resources needed.
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Ng, Carmen K. M., Dara K. Y. Leung, Xinxin Cai, and Gloria H. Y. Wong. "Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia." International Journal of Environmental Research and Public Health 18, no. 6 (March 13, 2021): 2956. http://dx.doi.org/10.3390/ijerph18062956.
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Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. This study examined the relationship between perceived help-seeking difficulty and carer burden, and the barriers contributing to perceived difficulty. We interviewed 110 carers accessing a community-based dementia assessment service for suspected dementia of a family member for their perceived difficulty, delays, and barriers in help-seeking, and carers burden in terms of role strain, self-criticism, and negative emotions. Linear regression models showed that perceived help-seeking difficulty is associated with carer self-criticism, while carer role strain and negative emotions are associated with symptom severity of the person with dementia but not help-seeking difficulty. Inadequate knowledge about symptoms, service accessibility, and affordability together explained more than half of the variance in perceived help-seeking difficulty (Nagelkerke R2 = 0.56). Public awareness about symptoms, support in navigating service, and financial support may reduce perceived difficulty in help-seeking, which in turn may reduce carer self-criticism during the early course of illness.
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Vedel, Isabelle, Carrie McAiney, Yves Couturier, Sarah Pakzad, Geneviève Arsenault-Lapierre, Claire Godard-Sebillotte, Nadia Sourial, Rachel Simmons, and Howard Bergman. "Assessing care models implemented in primary healthcare for persons with dementia: a mixed-methods study protocol." BMJ Open 10, no. 5 (May 2020): e035916. http://dx.doi.org/10.1136/bmjopen-2019-035916.
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IntroductionDementia is on the rise in Canada and globally. Ensuring accessibility to diagnosis, treatment and management throughout the course of the disease is a very significant problem worldwide. In order to provide comprehensive care to patients and their caregivers, enhancing primary care-based dementia care is seen as the way forward. In many Canadian provinces various collaborative care models (collCMs) anchored in primary care to improve dementia care have been developed and implemented. The overall objective of our research programme is to identify key factors for the successful implementation of collCMs, and to facilitate dissemination and scale-up of dementia best practices.Methods and analysisWe will use a convergent mixed-methods design. An observational study using chart review (2014–2016) and questionnaires (2014–2018; repeated in 2020) will measure application of guidelines and implementation of collCMs. This study will be complemented with a qualitative descriptive study using interviews (2017–2020) conducted in parallel. Quantitative and qualitative results will be further integrated using a matrix representing sites and findings. An integrated knowledge exchange strategy will ensure uptake by principal stakeholders throughout the research.Ethics and disseminationOur study has been approved by all relevant ethics committees. Our dissemination plan follows an integrated knowledge transfer strategy using provincial, national and international councils. We will present the results individually to the clinical sites and then to these councils. Our research will be the first provincial and cross jurisdictional evaluation of primary care models for patients living with dementia, providing evidence on the ongoing debate on the respective role of clinicians in primary care and specialists in caring for patients with dementia.
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Steele, Linda, Kate Swaffer, Lyn Phillipson, and Richard Fleming. "Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes." Laws 8, no. 3 (August 15, 2019): 18. http://dx.doi.org/10.3390/laws8030018.
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This article explores how care homes—and, specifically, their common features such as dementia care units and locked doors and gates—impact on the human rights of people living with dementia. We suggest that congregation, separation and confinement of people living with dementia by the care home built environment constitute ‘segregation’. In the specific context of residential aged care facilities in Australia, we draw on the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’) to frame this segregation as an injustice. We focus on the rights to non-discrimination (Article 5), liberty and security of the person (Article 14), equality before the law (Article 12), accessibility (Article 9), and independent living and community inclusion (Article 19). Our analysis shows that addressing segregation must involve structural and resource reforms that are transformative in bringing about new ways of living and relating to each other. Such reforms are directed towards providing meaningful alternatives and appropriate supports to make choices from a range of alternative residency and support options, and building communities that are free from ableism, ageism and other systems of oppression that contribute to confinement and segregation.
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Elliot, Valerie, Debra Morgan, Julie Kosteniuk, Melanie Bayly, Amanda Froehlich Chow, Allison Cammer, and Megan E. O’Connell. "Palliative and end-of-life care for people living with dementia in rural areas: A scoping review." PLOS ONE 16, no. 1 (January 14, 2021): e0244976. http://dx.doi.org/10.1371/journal.pone.0244976.
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Background and objectives People living with dementia deserve to experience the benefits of receiving palliative care and end-of-life services and supports, yet they often do not receive this care compared to those with other terminal diseases. People living with dementia in rural areas often face additional challenges to accessing such care. The purpose of this scoping review was to systematically review and synthesize the literature on palliative and end-of-life care for people with dementia living in rural areas, and to identify and describe key findings and gaps in the literature. Methods A collaborative research team approach was used in an iterative process across all stages of this review. Systematic, comprehensive searches were conducted across ten databases and eight targeted websites for relevant peer-reviewed, original research and other less formal literature, published in English, which yielded a total of 4476 results. After duplicate removal, screening, and review, 24 items were included for synthesis. Results All items were described and illustrated by frequency distribution, findings were grouped thematically, and five key themes emerged, including: 1) Knowledge about dementia, 2) Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3) Decision-making about care, the value of a person-centered approach and collaborative support, 4) Perspectives on artificial nutrition, hydration, and comfort care, and 5) Quality of life and death. The main gap identified was literature pertaining to rural populations, especially from locations other than the United States. The influence of rurality on relevant findings was mixed across rural-urban comparison studies, as was the effect of sex and gender across the literature. Conclusions Several areas were highlighted including the importance of increasing knowledge about dementia, having early conversations about advanced care and treatment options, providing a person-centered approach, and the potential for using technology to address rural access issues. These findings can be used to inform future research and policy and the development of services, supports, and strategies for rural people living with dementia. Further research is recommended.
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Freyne, Aideen, Martina Dolan, and Colm Cooney. "Carer-rated needs assessment of a cohort of people with dementia." Irish Journal of Psychological Medicine 27, no. 2 (June 2010): 72–76. http://dx.doi.org/10.1017/s0790966700001087.
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AbstractObjectives: With increasing longevity, more people will develop dementia. These people will have a wide range of needs according to their circumstances. Services in the community struggle to meet these needs. This study aimed to identify needs of dementia sufferers attending the South Dublin Old Age Psychiatry service as rated by their carers, to assess the extent of unmet need and the implication of this.Method: The carers of 40 community-dwelling people with dementia attending the service were interviewed by one researcher using the Camberwell Assessment of Need for the Elderly (CANE). This measures a wide range of needs over 24 areas, from personal care, to social, financial and psychological care needs. Qualitative information was also obtained from carers regarding services available and their accessibility. A measure of carer stress and satisfaction with help for this was also obtained.Results: Overall, the highest levels of need identified (both met and unmet) were in the areas of psychological functioning (memory and psychological distress), followed by social needs in the areas of managing money, daytime activities, self-care, and looking after the home. Highest unmet social needs were in the areas of daytime activities, home care and managing money. For 23/24 domains, carers were satisfied rather then unsatisfied with help received. The areas of greatest dissatisfaction to them concerned daytime activities, household skills and self-care. Over half of the carers reported psychological distress.Conclusion: High levels of need, both met and unmet were identified. Many identified needs related to the provision of community supports in the areas of selfcare, household skills and daytime activities, in addition to psychiatric needs. Assessment of needs is important to ensure adequate and responsive service provision, in keeping with the ethos of community care.
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Smaling, Hanneke J. A., Karlijn J. Joling, Peter M. van de Ven, Judith E. Bosmans, Joyce Simard, Ladislav Volicer, Wilco P. Achterberg, Anneke L. Francke, and Jenny T. van der Steen. "Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial." BMJ Open 8, no. 10 (October 2018): e025411. http://dx.doi.org/10.1136/bmjopen-2018-025411.
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IntroductionQuality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable.Methods and analysisOur study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed.Ethics and disseminationThe study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate.Trial registration numberNTR5692.
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Bayly, Melanie, Debra Morgan, Amanda Froehlich Chow, Julie Kosteniuk, and Valerie Elliot. "Dementia-Related Education and Support Service Availability, Accessibility, and Use in Rural Areas: Barriers and Solutions." Canadian Journal on Aging / La Revue canadienne du vieillissement 39, no. 4 (January 24, 2020): 545–85. http://dx.doi.org/10.1017/s0714980819000564.
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ABSTRACTThis scoping review mapped and synthesized published literature related to education and support services for individuals with dementia and their caregivers living rurally. Specifically, we investigated education and support service needs, availability and use of services, barriers to service access and use, and solutions to these barriers. Empirical, English-language articles (2,381) were identified within MEDLINE, CINAHL, PSYCINFO, and EMBASE. Articles were screened according to Arksey and O’Malley’s (2005) five-stage scoping review methodology and the recommendations of Levac et al. (2010). Findings suggest limited availability of rural dementia-related support and education services, particularly respite care and day programs. Service use varied across studies, with barriers including low knowledge regarding services, practicality, and resource issues (e.g., transportation, financial), values and beliefs, stigma, and negative perceptions of services. Solutions included tailored and person-centred services, technological service provision, accessibility assistance, inter-organization collaboration, education regarding services, and having a “point of entry” to service use.
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Madan, Robert, Marsha Natadiria, Anna Berall, Anna Theresa Santiago, and Kenneth Schwartz. "A Novel Instrument for Caregivers in Managing Neuropsychiatric Symptoms of Dementia: Baycrest Quick-Response Caregiver ToolTM *." Canadian Geriatrics Journal 25, no. 4 (December 1, 2022): 368–74. http://dx.doi.org/10.5770/cgj.25.603.
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Background Family caregivers can experience significant stress related to behaviour changes in persons with dementia (PWD). Approaches to support caregivers with stress management when responding to changes in behaviours are needed. The Baycrest Quick-Response Caregiver ToolTM (BQRCT) was developed to provide caregivers with an online tool that can be used in real time to recognize and manage their emotions when managing neuropsychiatric symptoms of dementia. Methods A mixed-methods approach was used to evaluate the feasibility of this new tool. Family caregivers of persons with dementia received education about managing neuropsychiatric symptoms of dementia through the online tool. Caregiver demographic information and feedback about the tool was obtained through telephone and online surveys. Health-care providers accessed the tool and also provided feedback. Results The 21 caregivers who completed the study found the tool helpful and reported high feasibility that included being able to access, complete, and implement the strategies presented in the tool. The 18 healthcare providers found the tool useful and most would recommend it to peers and clients. Participants also provided specific suggestions for improvement, such as including more examples of complex behaviours. Conclusions This tool adds to and complements existing strategies for managing neuropsychiatric symptoms of dementia. Its accessibility through the online platform is especially useful for caregivers who are unable to seek help in person, and for health-care providers and caregivers seeking additional resources.
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Pot, Anne Margriet, Marco M. Blom, and Bernadette M. Willemse. "Acceptability of a guided self-help Internet intervention for family caregivers: mastery over dementia." International Psychogeriatrics 27, no. 8 (February 4, 2015): 1343–54. http://dx.doi.org/10.1017/s1041610215000034.
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ABSTRACTBackground:The number of people with dementia is increasing rapidly. Providing care to a relative or friend with dementia may lead to serious mental health problems. Internet interventions may offer opportunities to improve the availability and accessibility of (cost)effective interventions to reduce family caregivers’ psychological distress. This study describes the acceptability of a guided self-help Internet intervention “mastery over dementia” (MoD), aimed at reducing caregivers’ psychological distress, in terms of reach, adherence and user evaluation.Methods:The sample for this study is the experimental group that participated in the (cost)effectiveness trial of MoD (N = 149). Data on characteristics of family caregivers and people with dementia, completion and user evaluation were used and analyzed with descriptive statistics, χ2and T-tests.Results:MoD reaches a wide variety of caregivers, also those aged 75+, having a relative with a recent diagnosis of dementia or living in a care home. However, the percentage of caregivers who did not complete all eight lessons was rather high (55.7%). Among the completers (N = 66; 44.3%) were significantly more spouses, caregivers living in the same household, older caregivers, and those caring for somebody with another formal diagnosis than Alzheimer's disease. Caregivers’ evaluation showed that females rated higher on the comprehensibility of the lessons and feedback and spent less time on the lessons.Conclusion:The guided self-help Internet intervention MoD is acceptable for a broad range of family caregivers of people with dementia. The next step is to substantiate its (cost)effectiveness.
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Zamfir, M. V., and M. Zamfir Grigorescu. "A Checklist for Assessing Dementia-friendly Design: Architecture as Non-pharmacological Mean in Assistance of Patients with Dementia." European Psychiatry 41, S1 (April 2017): S667. http://dx.doi.org/10.1016/j.eurpsy.2017.01.1136.
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IntroductionAlthough there are recommendations regarding dementia-friendly architecture, studies on design features and their impact on quality of life of patients with dementia are quasi-nonexistent. The design of the environment is one of the non-pharmacological methods in the assistance of patients with dementia.ObjectivesSetting a checklist of design principles in order to assess centers for elderly with dementia; identifying the types of centers where will be applied the checklist; implementation of the checklist and determining results of assessment.AimsOur aim is to challenge the contemporary architecture of centers for elderly to be friendly with dementia patients.MethodsAfter studying literature we built a check-list of 8 principles: providing a comfortable space and also a therapeutically environment; functionality and efficiency; flexibility and accessibility; optimal design of circulation routes in order to avoid disorientation and to reduce agitation; security and safe; aesthetics; sanitation; sustainability. We then performed a case-study on two types of settings, day care centers and respite centers, and we applied the check list on three examples: two urban Day Care Centers for patients with Alzheimer Dementia (2006, Pontevedra, Spain and 2011, Alicante, Spain) and a Respite Center (2009, Dublin, Ireland).ResultsIn general, the centers are verifying the proposed checklist. Four architectural tools were identified: light, form, colour and texture. Form is more recognizable than colour and colour more recognizable than function.ConclusionsArchitecture contributes to increase quality of life in people with dementia. The proposed checklist is a promising tool for assessing dementia-friendly design.Disclosure of interestThe authors have not supplied their declaration of competing interest.
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Martinez-Ruiz, Adrian, Ying Huang, Susan Gee, Hamish Jamieson, and Gary Cheung. "Individual risk factors for possible undetected dementia amongst community-dwelling older people in New Zealand." Dementia 19, no. 3 (July 10, 2018): 750–65. http://dx.doi.org/10.1177/1471301218786277.
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There is general acknowledgement of the importance of early diagnosis of dementia, yet there are still high rates of undetected dementia internationally. The aim of this cross-sectional study was to determine the sociodemographic characteristics associated with possible undetected dementia in a large sample of community-dwelling older New Zealanders. The sample consisted of older people (age ≥ 65) who had received the homecare version of the international Residential Home Care Assessment version 9.1 over a two-year period and who were screened positive for possible dementia on the international Residential Assessment’s Cognitive Performance Scale. People with possible alternative explanations for impaired cognitive performance such as depression and other neurological conditions were excluded from analysis. The 5202 eligible individuals were categorized into two groups: (1) those with a recorded diagnosis of dementia (64%) and (2) those without a recorded diagnosis of dementia (i.e. possible undetected dementia group) (36%). Logistic regression was used to evaluate the association between individual characteristics and possible undetected dementia. Significant risk factors for being in the possible undetected dementia group included Asian ethnicity, living alone, not having participated in long-standing social activities recently, major life stressors, and limited accessibility of their house. The knowledge gained from this study could enable targeting of services and resources for the groups at risk of undetected dementia to have a more equitable access to early diagnosis.
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Perez, G. Adriana, Kelly O'Brien, Marwan Sabbagh, and Michelle Bruno. "Clinical Recommendations for Reducing the Risk of Cognitive Decline." Innovation in Aging 5, Supplement_1 (December 1, 2021): 186. http://dx.doi.org/10.1093/geroni/igab046.707.
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Abstract As much as 40% of dementia cases can be attributed to modifiable risk factors (Livingston et al., 2020). Much of that risk-reduction can be accomplished by changing behavior in midlife. In light of the emerging evidence that dementia may be preventable, UsAgainstAlzheimer’s convened a workgroup of national experts to develop new recommendations that primary care clinicians and general neurologists can use to initiate primary prevention conversations with their patients about cognitive decline. Few resources address steps that clinicians can take in their routine care to help patients reduce risk. Some relevant resources provide excellent guidance but tend to be more focused on early detection or slowing disease progression rather than primary prevention. The Risk Reduction Workgroup (RRWG) was convened to help address the need for clinicians to know how to discuss cognitive decline with their patients. The workgroup aligned on 11 recommendations for primary care clinicians and general neurologists. In addition the RRWG provide considerations for implementing the recommendations in clinical practice. The recommendations are mindful of social determinants of health, account for cultural differences, and are designed for general accessibility. This effort is part of a broader initiative by UsAgainstAlzheimer’s to address risk-reduction for cognitive decline and early interventions. Under the guidance of a multidisciplinary Provider Leadership Group consisting of representatives from some of the nation's largest health provider serving organizations, three independent workgroups are developing guidance and tools to assist providers in their clinical practice and improve health outcomes for patients at-risk for Alzheimer's and related dementias.
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Donath, Carolin, Angelika Winkler, and Elmar Gräßel. "Short-term residential care for dementia patients: predictors for utilization and expected quality from a family caregiver's point of view." International Psychogeriatrics 21, no. 4 (August 2009): 703–10. http://dx.doi.org/10.1017/s1041610209009193.
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ABSTRACTBackground: Short-term residential care (SRC) has proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors which influence its usage or the expectations of family caregivers regarding quality. In this paper we address the following questions: (i) which variables of the care situation, the caregivers and their attitudes act as predictors for the utilization of SRC facilities? (ii) What are the views of caregivers about the quality of SRC?Methods: The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in four regions of Germany. With a 20% response it was possible to analyze the quantitative and qualitative data from 404 and 254 family caregivers respectively. Predictors for utilization were evaluated using binary logistic regression analysis. The answers to questions of quality were evaluated using qualitative content analysis.Results: Significant predictors for the utilization of SRC are the assessment of the helpfulness of SRC and the caregiver's knowledge of the accessibility of SRC facilities. Family caregivers who had already used SRC most frequently expressed the wish for “good care” in SRC facilities, followed by a program of suitable activities for dementia patients.Conclusions: In order to increase the rate of utilization, family caregivers must be convinced of the relevant advantages of using SRC facilities. The staff should be trained in caring for dementia patients and appropriate activities should be available.
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Shannon, Kay, and Birgit Jurgenhake. "Dutch care environments for people with dementia: impressions from the perspectives of an architect and a gerontologist." Working with Older People 24, no. 2 (April 3, 2020): 143–47. http://dx.doi.org/10.1108/wwop-01-2020-0002.
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Purpose The purpose of this paper is to discuss Dutch innovative care environments for older people, including those living with dementia, from the perspectives or an architect and a social gerontologist. Design/methodology/approach The authors visited three care environments for older people, each offering an innovative approach to living housing older people, including people with dementia. The settings are discussed from two disciplinary perspectives, facilitating an understanding of the influence of the built environment on daily life for residents. Findings The three facilities were all architecturally varied and resembled “real” homes to varying degrees. Additionally, each entrance offered a different welcome to the external community, ranging from full accessibility to a closed and fortified appearance. Within each facility, the built environment afforded residents opportunities to participate in valued activities, including interacting with members of the wider community. Originality/value The inclusion of two disciplinary perspectives offers a richer discussion of the physical and social aspects of the care environments that would be offered by one perspective alone.
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Mitchell, Lynne, Elizabeth Burton, Shibu Raman, Tim Blackman, Mike Jenks, and Katie Williams. "Making the outside World Dementia-Friendly: Design Issues and Considerations." Environment and Planning B: Planning and Design 30, no. 4 (August 2003): 605–32. http://dx.doi.org/10.1068/b29100.
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Design guidelines for dementia care homes have, in recent years, acknowledged the important role the internal environment plays in influencing the functional capabilities and emotional well-being of people with dementia. However, although the majority of people with dementia live in the community, similar guidance does not exist in relation to the outdoor environment. To identify aspects of design that should be considered in making the outside world dementia-friendly an analysis of the literature on the needs of older people with dementia and on current knowledge of best practice for internal environments was carried out. By drawing parallels with the outside environment this paper demonstrates that design solutions do potentially exist which would enable older people with dementia to continue to negotiate and use their local neighbourhoods. Familiarity, legibility, distinctiveness, accessibility, comfort, and safety all appear to have a major influence. Small street blocks with direct, connected routes and good visual access, varied urban form, and architectural features, and distinctive, unambiguous environmental cues could enhance successful orientation and wayfinding. Services and facilities within walking distance with adequate seating, lighting, shelter, and well-maintained, smooth, level, plain paving would ameliorate attending problems of physical frailty. The authors are now empirically testing these initial findings.
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James, Nicholas, and Daniel Paulson. "SUPPORT AND EDUCATION NEED FULFILLMENT IN INFORMAL DEMENTIA CAREGIVERS." Innovation in Aging 3, Supplement_1 (November 2019): S286. http://dx.doi.org/10.1093/geroni/igz038.1056.
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Abstract Caregivers vary widely in their need for and utilization of support services, and there are many reasons for this (e.g., time or financial cost, distance, perception of need). This study explored the disparity between services that are desired and those that are utilized, and examined the hypothesis that unmet needs are a determinant of caregiver burden. An online sample of informal caregivers (N=151) responded to a questionnaire containing a list of common caregiver support services: sharing duties, professional transportation, respite care, non-profit community organizations, financial counseling, caregiver education programs, support groups. Participants were presented with a list of support services and information and asked to indicate A) which they desired and B) which they had received while providing care. Respite care and financial counseling were identified as support that caregivers were unable to obtain, while caregiving education and family/friend support were most commonly fulfilled. A linear regression model controlling for demographic variables was constructed. Unfulfilled support needs accounted for 40.6% of variance in caregiver burden, however the final model included only total ratio of unfulfilled services, transportation services, stress management skills, professional treatment for the caregiver, and behavioral management skills. Results highlight the unique contribution of certain support services in burden reduction. These findings imply a need to improve accessibility to caregiver support, especially those which require payment (e.g., transportation aids and mental healthcare). Further implications and actionable changes related to caregiver support services are discussed.
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Pozo Menéndez, Elisa, and Ester Higueras García. "Best Practices from Eight European Dementia-Friendly Study Cases of Innovation." International Journal of Environmental Research and Public Health 19, no. 21 (October 31, 2022): 14233. http://dx.doi.org/10.3390/ijerph192114233.
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The concept of dementia-friendly cities and communities has achieved great dissemination in the international context since 2016. Although it is usually related with community networks and services, evidence and guidelines show the close relationship between the built environment design, health promotion, and the preservation of relationships with the local surroundings. Recent publications emphasize best practices in urban areas and care management. However, this is a very complex reality in each country depending on the sociosanitary services, the demographic, and geographic structure and many other different aspects including cultural ones. Moreover, design should also consider not only basic aspects such as habitability or universal accessibility, but also heritage, identity, and the feeling of normalized living. Knowledge about international experiences and innovative approaches is, as yet, an object of study as demographic ageing is still challenging all the welfare systems, especially in Europe. This study presents eight descriptive study cases in three different European countries—the United Kingdom, Belgium, and The Netherlands—to analyze the relationship between dementia-friendly initiatives and their intersection with design, urban planning and the provision of care. The results can provide strategic lines for development and innovation towards dementia-friendly societies and cities achieving SDG numbers 3 and 11 simultaneously.
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Andersen, Stacy, and Patricia Heyn. "Alzheimer’s Disease Research and Outreach in the New Normal: Transitioning to the Virtual World." Innovation in Aging 5, Supplement_1 (December 1, 2021): 135–36. http://dx.doi.org/10.1093/geroni/igab046.525.
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Abstract Following disruptions to research, clinical trials, and support for individuals with Alzheimer’s disease and related dementias (ADRD), 2020 taught us important lessons about the need for creativity, flexibility, and resourcefulness during an urgent and global public health crisis. The COVID-19 pandemic showed that we have knowledge and technology that can be rapidly implemented, adopted, and utilized by many sectors to allow the continued care and research of our older adult population with ADRD. Thus, this symposium will address virtual methods that are transforming ADRD research and support. First, Dr. Rhodus will discuss the implementation of online assessments in clinical trials at an Alzheimer’s Disease Research Center and the effects of sociodemographic disparities in online accessibility. Next, Dr. Bazzano will describe methods of remote collection of brain health data through tablets, smartphones, and wearables in the Bogalusa Heart Study. Then, Dr. Andersen will report on the transition from in-person to virtual assessments of cognitive and physical function in centenarian studies and address strategies for inclusivity of individuals with limited technology experience. Next, Dr. Fazio will introduce Project VITAL which aims to impact social isolation by increasing accessibility to virtual education and support for care community staff, family caregivers, and individuals with dementia. Finally, Dr. Penfold will report on the translation of a paper-based, face-to-face intervention for reducing caregiver burden into a self-directed online learning program. Overall, these presentations highlight successes and challenges in incorporating virtual-based methods to maintain engagement with participants, individuals with ADRD, and caregivers during the pandemic and beyond.
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Zhang, Jinxia, Esmé Eggink, Xiaoyu Zhang, Xingming Li, Bin Jiang, Hongmei Liu, Siqi Ge, et al. "Needs and views on healthy lifestyles for the prevention of dementia and the potential role for mobile health (mHealth) interventions in China: a qualitative study." BMJ Open 12, no. 11 (November 2022): e061111. http://dx.doi.org/10.1136/bmjopen-2022-061111.
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ObjectivesOver the coming decades, China is expected to face the largest worldwide increase in dementia incidence. Mobile health (mHealth) may improve the accessibility of dementia prevention strategies, targeting lifestyle-related risk factors. Our aim is to explore the needs and views of Chinese older adults regarding healthy lifestyles to prevent cardiovascular disease (CVD) and dementia through mHealth, supporting the Prevention of Dementia using Mobile Phone Applications (PRODEMOS) study.DesignQualitative semi-structured interview study, using thematic analysis.SettingPrimary and secondary care in Beijing and Tai’an, China.ParticipantsOlder adults aged 55 and over without dementia with an increased dementia risk, possessing a smartphone. Participants were recruited through seven hospitals participating in the PRODEMOS study, purposively sampled on age, sex, living area and history of CVD and diabetes.ResultsWe performed 26 interviews with participants aged 55–86 years. Three main themes were identified: valuing a healthy lifestyle, sociocultural expectations and need for guidance. First, following a healthy lifestyle was generally deemed important. In addition to generic healthy behaviours, participants regarded certain specific Chinese lifestyle practices as important to prevent disease. Second, the sociocultural context played a crucial role, as an important motive to avoid disease was to limit the care burden put on family members. However, time-consuming family obligations and other social values could also impede healthy behaviours such as regular physical activity. Finally, there seemed to be a need for reliable and personalised lifestyle advice and for guidance from a health professional.ConclusionsThe Chinese older adults included in this study highly value a healthy lifestyle. They express a need for personalised lifestyle support in order to adopt healthy behaviours. Potentially, the PRODEMOS mHealth intervention can meet these needs through blended lifestyle support to improve risk factors for dementia and CVD.Trial registration numberISRCTN15986016; Pre-results.
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Connell, Joanne, and Stephen Page. "Tourism, ageing and the demographic time bomb – the implications of dementia for the visitor economy: a perspective paper." Tourism Review 75, no. 1 (August 12, 2019): 81–85. http://dx.doi.org/10.1108/tr-02-2019-0070.
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Purpose This paper aims to examine the development of research on ageing and demography and the implications for the study of tourism. It examines the demographic time bomb created by an ageing population and the implications of complex health conditions, such as dementia, for the visitor economy. Practical measures are identified with an example of a “call to action” for small to medium-sized tourism businesses. Design/methodology/approach This review is based on existing knowledge of ageing and draws upon a historical timeline that stretches from the nineteenth century to 2100. Findings The impact of complex health conditions such as dementia will pose major challenges for the visitor economy and will require behavioural change within existing business practices to accommodate the needs of people with dementia and their carers. Research limitations/implications Major changes in business practices and the development of more holistic views of accessibility will be needed to accommodate an ageing population in 2100. Some of the initial changes businesses can make are outlined in a “call to action” leaflet extract. Practical implications Businesses will need to focus more on customer care practices to ensure that they can accommodate the complex needs of people with dementia and their carers as they continue to pursue the tourism and leisure activities that they have grown accustomed to. Social implications Businesses will need to become more fully engaged with new agendas on accessibility, inclusivity and good business practice that raise significant ethical, financial and legal issues for the way they do business in the future. Originality/value The paper sets out an overarching grand societal challenge around ageing that is now confronting many countries worldwide. As part of that agenda, this paper raises the issue of hidden conditions such as dementia. The paper seeks to stimulate a wider debate for researchers and policymakers going forward, framed around the following questions which arise from the paper: How is dementia understood as a hidden condition in the visitor economy? To what extent is there awareness and action in the visitor economy sector? What can the visitor economy sector do to address issues of inclusivity and dementia?
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Nieman, Carrie, Jennifer Deal, Sara Czaja, and Esther Oh. "Hearing Care Disparities in Dementia: Access and Usability in the Coming Era of OTC Hearing Aids." Innovation in Aging 4, Supplement_1 (December 1, 2020): 746. http://dx.doi.org/10.1093/geroni/igaa057.2686.
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Abstract Age-related hearing loss is highly prevalent among persons with dementia (PwDs) and is associated with an increased risk of neuropsychiatric symptoms. However, few use hearing aids and disparities exist. PwDs and, in particular, minority older adults, have some of the lowest rates of hearing aid use. Recent federal legislation created the designation of over-the-counter hearing aids, which will debut by 2020-2021, and represents an opportunity to advance accessibility. This presentation will share estimates of hearing aid use among community-dwelling PwDs from two cohorts, where hearing aid use ranges from 7-11% among African Americans versus 33-45% among whites. To explore this gap, the presentation will share findings from semi-structured interviews with care partners of PwDs and hearing loss around barriers and facilitators of hearing care, including device usability. With growing understanding of sensory health, a changing hearing care landscape represents a critical opening to increase access to hearing care for PwDs. Part of a symposium sponsored by the Alzheimer’s Disease Research Interest Group.
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Levinson, Anthony J., Stephanie Ayers, Lianna Butler, Alexandra Papaioannou, Sharon Marr, and Richard Sztramko. "Barriers and Facilitators to Implementing Web-Based Dementia Caregiver Education From the Clinician’s Perspective: Qualitative Study." JMIR Aging 3, no. 2 (October 2, 2020): e21264. http://dx.doi.org/10.2196/21264.
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Background Internet-based dementia caregiver interventions have been shown to be effective for a range of caregiver outcomes; however, little is known about how to best implement them. We developed iGeriCare, an evidence-based, multimedia, web-based educational resource for family caregivers of people living with dementia. Objective This study aims to obtain feedback and opinions from experts and clinicians involved in dementia care and caregiver education about 1 iGeriCare and 2 barriers and facilitators to implementing a web-based caregiver program. Methods We carried out semistructured interviews with individuals who had a role in dementia care and/or caregiver education in several key stakeholder settings in Southern Ontario, Canada. We queried participants’ perceptions of iGeriCare, caregiver education, the implementation process, and their experience with facilitators and barriers. Transcripts were coded and analyzed using a grounded theory approach. The themes that emerged were organized using the Consolidated Framework for Implementation Research. Results A total of 12 participants from a range of disciplines described their perceptions of iGeriCare and identified barriers and facilitators to the implementation of the intervention. The intervention was generally perceived as a high-quality resource for caregiver education and support, with many stakeholders highlighting the relative advantage of a web-based format. The intervention was seen to meet dementia caregiver needs, partially because of its flexibility, accessibility, and compatibility within existing clinical workflows. In addition, the intervention helps to overcome time constraints for both caregivers and clinicians. Conclusions Study findings indicate a generally positive response to the use of internet-based interventions for dementia caregiver education. Results suggest that iGeriCare may be a useful clinical resource to complement traditional face-to-face and print material–based caregiver education. More comprehensive studies are required to identify the effectiveness and longevity of web-based caregiver education interventions and to better understand barriers and facilitators with regard to the implementation of technology-enhanced caregiver educational interventions in various health care settings.
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OConnor, Melissa, Megan Pedersen, and Rachel Grace. "A Qualitative Study on Making Rural Communities More Dementia-Friendly." Innovation in Aging 4, Supplement_1 (December 1, 2020): 281. http://dx.doi.org/10.1093/geroni/igaa057.899.
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Abstract Recent studies on attitudes toward dementia in the United States, such as the World Alzheimer Report 2019, have found that fear and stigma are still widespread among the general public. This may be particularly true in rural communities. In the current study, community-dwelling adults in small Midwestern communities responded to the open-ended survey question, “What do you think could be done to make your community more welcoming for people with Alzheimer’s disease and other forms of dementia?” Participants (N=242) ranged in age from 18-88 (M=40, SD=21). The sample was 68% female, and 61% lived in communities of 50,000-150,000 people, while 39% lived in smaller towns. Most participants (61.2%) did not personally know someone with dementia. Data were collected via paper and telephone surveys. Responses to the open-ended question were analyzed using open, axial, and selective coding. The following themes emerged: greater exposure to individuals with dementia; educational workshops about dementia; more intergenerational programs; greater accessibility of respite care and other services; more fundraising efforts; and community leaders talking about dementia. Responses included, “Have more intergenerational programs that bring together Alzheimer’s patients and children in a positive environment.” “When I was in school, we visited an Alzheimer’s unit. That was a great experience.” “I know what it is, but I don’t know anything else. I wish I was more informed. I don’t know how to help.” These findings indicate that residents of rural communities are motivated to help individuals with dementia, but need more guidance, education, and personal connections/exposure.
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Kim, Sarang, Aidan Bindoff, Maree Farrow, Fran McInerney, Jay Borchard, and Kathleen Doherty. "Is the Understanding Dementia Massive Open Online Course Accessible and Effective for Everyone? Native Versus Non-Native English Speakers." International Review of Research in Open and Distributed Learning 22, no. 3 (April 21, 2021): 19–33. http://dx.doi.org/10.19173/irrodl.v22i3.5380.
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Most massive open online courses (MOOCs) are offered in English, including those offered by non-English speaking universities. The study investigated an identified English language dementia MOOC’s accessibility and effectiveness in improving the dementia knowledge of non-native English speaker participants. A total of 6,389 enrolees (age range 18–82 years; 88.4% female) from 67 countries was included in analyses. Dementia knowledge was measured by the Dementia Knowledge Assessment Scale (DKAS) before and after the MOOC completion. Rates of completion were also compared. Native English speakers (n = 5,320) were older, more likely to be female, less likely to be employed, and had lower educational attainment than non-native English speakers (n = 1025). Native English speakers were also more likely to care for or have cared for a family member or friend living with dementia than were non-native English speakers. Native English speakers had a significantly higher DKAS score both pre- (M = 33.0, SD = 9.3) and post-MOOC (M = 44.2, SD = 5.5) than did non-native English speakers (M = 31.7, SD = 9.1; and M = 40.7, SD = 7.7 for pre- and post-MOOC, respectively). Non-native English speakers with low pre-MOOC dementia knowledge scores gained significantly less dementia knowledge following course completion than did native English speakers (p <.001, adjusted for age and education). There was no significant difference between the two groups in their likelihood of completing the MOOC. Our findings suggest that non-native English speakers are motivated and able to complete the MOOC at similar rates to native English speakers, but the MOOC is a more effective educational intervention for native English speakers with low dementia knowledge.
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Evans, Simon Chester, and Jennifer Bray. "Best practice for providing social care and support to people living with concurrent sight loss and dementia: professional perspectives." Working with Older People 20, no. 2 (June 13, 2016): 86–93. http://dx.doi.org/10.1108/wwop-11-2015-0028.
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Purpose – Approximately 100,000 people in the UK aged 75 and over have concurrent dementia and sight loss, but current understanding of their experiences, needs and preferences is limited. The purpose of this paper is to report on a research project that explored the provision of social care and support for older people with both conditions. Design/methodology/approach – The project was a collaboration between the universities of York, Worcester, Bournemouth and Cambridge, supported by the Thomas Pocklington Trust and the Housing and Dementia Research Consortium. Data for this paper were drawn from focus groups held in 2013 involving 47 professionals across the dementia, sight loss and housing sectors. Findings – Thematic analysis identified five main barriers to providing high-quality, cost-effective social care and support: time constraints; financial limitations; insufficient professional knowledge; a lack of joint working; and inconsistency of services. The requirements of dementia and sight loss often conflict, which can limit the usefulness of equipment, aids and adaptations. Support and information needs to address individual needs and preferences. Research limitations/implications – Unless professionals consider dementia and sight loss together, they are unlikely to think about the impact of both conditions and the potential of their own services to provide effective support for individuals and their informal carers. Failing to consider both conditions together can also limit the availability and accessibility of social care and support services. This paper is based on input from a small sample of self-selecting professionals across three geographical regions of England. More research is needed in this area. Practical implications – There are growing numbers of people living with concurrent dementia and sight loss, many of whom wish to remain living in their own homes. There is limited awareness of the experiences and needs of this group and limited provision of appropriate services aids/adaptations. A range of measures should be implemented in order to support independence and well-being for people living with both conditions and their family carers. These include increased awareness, improved assessment, more training and greater joint working. Social implications – People living with dementia or sight loss are at high risk of social isolation, increasingly so for those with both conditions. Services that take an inclusive approach to both conditions can provide crucial opportunities for social interaction. Extra care housing has the potential to provide a supportive, community-based environment that can help residents to maintain social contact. Originality/value – This paper adds much-needed evidence to the limited existing literature, and reflects the views of diverse professionals across housing, health and social care.
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Ahsan, Rakhshan, Naheed Anwar, Afifa Tanveer, and Hafiza Khushbakhat. "Adaptive Clothing as a Fundamental Castigatory Requirement of Old Patient with Alzheimer." Review of Education, Administration & LAW 1, no. 1 (December 31, 2018): 13–22. http://dx.doi.org/10.47067/real.v1i1.2.
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Families have vital role in the medical care of Alzheimer's which is most common among the old age people. It I is kind of dementia that fosters problems in the thinking, memory and the incapability to activate modest implementations, or orient clothing to the human body. In such cases family members have vital role for the care of patients. Dressing of Alzheimer`s patient is main tension for care contributors therefore this research discourse the dressing difficulties to Alzheimer`s patient encountered by care givers. A qualitative research method found to explore care givers perception about dressing issues that arise when their family member loss the capacity to dress independently. In-depth-interview was used as a data collection instrument from the care givers of the patients. Doctors were also interviewed to acquire the understanding about Alzheimer disease. In order to improve the quality of care givers survives and sustain their ability to sustenance and care for the enduring adaptive dress is very valuable as it provides ease to them while dressing. Therefore after examination of interviews researcher identified dressing difficulties and believers clothing adaptations that provide accessibility to care giver.
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Ferdous, Farhana. "Positive Social Interaction by Spatial Design: A Systematic Review of Empirical Literature in Memory Care Facilities for People Experiencing Dementia." Journal of Aging and Health 32, no. 9 (September 13, 2019): 949–61. http://dx.doi.org/10.1177/0898264319870090.
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Objective: The objective of this review is to outline a comprehensive set of possible design interventions focusing on spatial and environmental design factors influencing positive social interaction, which is one of the key aspects of quality of life (QoL) in long-term care facilities (LTCFs). Methods: This systematic literature review synthesized research evidence from seven databases (after the year 2000) spanning medical and health literature, environmental psychology, architecture, interior design, and evidence-based design literature. Results: The key spatial design characteristics of the facilities shown to affect positive social interaction were as follows: (a) The Physical Environment and Setting; (b) Accessibility, Legibility, and Layout; (c) Social Environment and Network; and (d) Staff–Resident Ratio and Care Philosophy. Conclusion: Several critical spatial design features of the facilities were identified. Spatial design interventions could influence the design decisions for future care facilities and provide designers the guidelines that are generalizable regardless of geographic location of the LTCF.
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Hoyt, Emily K., Karen A. Roberto, and Jyoti Savla. "COMBATTING LONELINESS: SERVICE USE AMONG RURAL FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA." Innovation in Aging 3, Supplement_1 (November 2019): S888. http://dx.doi.org/10.1093/geroni/igz038.3249.
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Abstract According to a 2018 AARP study, 42% of unpaid caregivers experience loneliness. While findings across multiple studies suggest that caregivers experience loneliness either because they lack intimacy in close relationships (i.e., emotional loneliness) or they feel disconnected from their social network (i.e., social loneliness), little is known about how aspects of dementia caregiving influence loneliness, particularly among rural caregivers. The purpose of this study was to examine the association between in-home service use and caregivers experience with both types of loneliness. Eighty-eight co-residing dementia caregivers in rural Appalachia (Mean Age = 68 years; 91% White; 58% Spouses) completed telephone interviews that included questions about their use of formal services and perceptions of emotional and social loneliness. More than half (58%) of the caregivers accessed 1 to 4 formal services. Regression models revealed that caregivers who experienced greater social loneliness were more likely to access personal care services (p=0.013) and respite services (p=0.004) compared to caregivers who experienced less social loneliness. Further, caregivers who experienced greater emotional loneliness were also more likely to access personal care (p=0.028) and respite (p=0.039) services compared to caregivers who experienced lower emotional loneliness. These associations remained robust even after controlling for relationship to the PwD (spouse vs. non-spouse). Findings suggest that beyond assisting with the care of the PwD, the use of formal services may help family caregivers manage loneliness and relieve social isolation. Discussion will focus on the importance of service accessibility and use for the health and psychological well-being of rural family caregivers.
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Seyyedmirza, Paria, Clark Benson, Diane Ploch Emily, Anna Linden, and Andrea Gilmore-Bykovskyi. "THE ROLE OF SUPPORT IN THE LIVED EXPERIENCE OF DEMENTIA CAREGIVERS: A SYSTEMATIC REVIEW AND THEMATIC SYNTHESIS." Innovation in Aging 6, Supplement_1 (November 1, 2022): 555. http://dx.doi.org/10.1093/geroni/igac059.2100.
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Abstract People living with dementia have complex care needs, which are primarily met by unpaid family caregivers. Family caregivers are often underprepared and under-supported in these roles and often experience negative health impacts associated with their caregiving responsibilities. Research suggests caregiving experiences and associated outcomes can be improved through the use of supportive resources which vary widely in design, access, and implementation. Yet how dementia caregivers perceive, identify, and experience supports in the context of their lived experience is less well understood. Understanding caregivers’ un-proscribed conceptualizations of “support” holds important implications for the optimal design of supportive interventions, which are often under-utilized. The objective of this qualitative evidence synthesis was to systematically identify, appraise, and synthesize evidence regarding dementia caregivers’ conceptualization of support through qualitative studies focused broadly on eliciting caregivers’ reports of lived experience. Forty-one qualitative studies were analyzed and synthesized according to methods suggested by Sandelowski (2007) and Graneheim & Lundman (2004). Six themes were identified and synthesized across included studies which include a range of domains from accessibility, awareness, usability, and match of informal and formal support for caregivers' needs and the needs of their care recipient. Caregivers conceptualized support broadly, extending beyond traditional resources to address aspects of their caregiving role. Findings demonstrate that caregivers readily distinguish between formal and informal support, but do not necessarily evaluate them uniformly and are perhaps focused on the fit of support that extends beyond the caregiving role and is more aligned with how caregivers view support in their daily lives.
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Lindeman, David, and Katherine K. Kim. "STRENGTHENING FAMILY CAREGIVING THROUGH INNOVATIVE TECHNOLOGY SOLUTIONS." Innovation in Aging 3, Supplement_1 (November 2019): S439. http://dx.doi.org/10.1093/geroni/igz038.1648.
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Abstract Technology has the potential to enhance the repertoire of tools for family caregiving to address the complexities of caring for older adults. There are examples of technology-enabled interventions helping older adults remain independent and safe in their home; easing the financial, physical, and psychological challenges of family caregiving; assisting in the management of chronic illness; improving socialization and support; offering information and resources on a “just in time” basis; and improving the quality of care and quality of life for both older adults and their family caregivers. This session will review eight evidence-based, technology-enabled solutions for family caregivers, including technology solutions that address medication adherence, falls prevention, personal emergency response, remote monitoring, telehealth, dementia tracking, social engagement, and care training. Key drivers for successful application of these interventions (e.g., technology, analytics, user experience design) as well as barriers to scaling (e.g., accessibility, affordability, regulation) will be reviewed.
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Karia, Aleesha, Reza Zamani, and Mohammad Akrami. "Socio-Economic Disparities in Access to Diagnostic Neuroimaging Services in the United Kingdom: A Systematic Review." International Journal of Environmental Research and Public Health 18, no. 20 (October 11, 2021): 10633. http://dx.doi.org/10.3390/ijerph182010633.
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Socio-economic factors affecting health care can lead to delays in diagnosis of neurological conditions, consequentially affecting treatment and morbidity rates. This inequality in health care can leave patients from lower socio-economic backgrounds more vulnerable to a poorer quality of care from health care providers in the United Kingdom (U.K.). Aims: In this systematic review, we assess the impact of socio-economic status on the use of diagnostic neuroimaging in the U.K., measured by the timeliness, accessibility and appropriate use of computed tomography (CT), magnetic resonance imaging (MRI), ultrasonography, electroencephalography (EEG) and single-photon emission computed tomography (SPECT). We specifically evaluate the non-surgical use of neuroimaging techniques as this relies on the judgment of primary care-givers (e.g., doctors and radiologists), where health disparities are most common. This study includes the analysis of diagnostic imaging used for dementia, minor head injury, stroke, cancer, epilepsy, chronic inflammatory demyelinating polyneuropathy and Parkinson’s disease. With this study, we aim to assess the health inequalities at disease diagnosis. Methods: Using Medline (via Ovid), PubMed and Web of Science databases as sources of information, we critically appraise existing studies on neuroimaging use in the U.K. health care system, published between January 2010 and February 2021. Findings: A total of 18 studies were included in this research, revealing that there was an increase in patients of Black and Asian communities diagnosed with dementia and at an earlier age. There was little evidence to suggest that a lack of access to diagnostic imaging is associated with socio-economic status. However, there are data to suggest that people of a lower socio-economic background require more specialist services with diagnostic neuroimaging tools. In addition, there is evidence to suggest that diagnostic neuroimaging techniques could be utilised more effectively by health care workers to prevent unnecessary delays in diagnosis for patients in lower socio-economic areas.
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Kaasalainen, Sharon, Abigail Wickson-Griffiths, and Rose McCloskey. "SUPPORTING RESIDENTS WITH DEMENTIA LIVING AND DYING IN LONG-TERM CARE AND THEIR FAMILIES DURING COVID-19." Innovation in Aging 6, Supplement_1 (November 1, 2022): 237. http://dx.doi.org/10.1093/geroni/igac059.940.
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Abstract TThis presentation will share research findings about experiences during COVID-19 about implementing a virtual palliative toolkit in long-term care in Canada. The toolkit includes tools and practices to: (a) engage residents and families with dementia within a palliative approach to care, (b) develop workforce capacity through online education modules, (c) reduce stress and improve psychological health of residents, families, and staff, and (d) develop organizational structures and processes to promote a palliative approach to care. Individual interviews were conducted with residents, family members, and staff before implementing a palliative toolkit and after using it. Findings highlighted the negative impacts of COVID-19 on resident health due to isolation within home, preventing family from being at the bedside and cancelling stimulatory activities especially at end of life that were exacerbated by the lack of resources and government supports. Families appreciated the virtual supports and stated that they helped prepare them for their loved ones’ death while feeling more empowered, engaged, and supported in their journey. Although feedback from families was mostly positive, stating the virtual toolkit improved accessibility to information and supports, it was clear that some misunderstood terms, particularly what a palliative approach to care means; and others had challenges navigating the virtual platform to use the toolkit. Future work is needed to make the virtual tools more user-friendly so that they can be scaled up more widely.
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Lovering, M. J., C. A. Cott, D. L. Wells, J. Schleifer Taylor, and L. M. Wells. "A Study of a Secure Garden in the Care of People with Alzheimer's Disease." Canadian Journal on Aging / La Revue canadienne du vieillissement 21, no. 3 (2002): 417–27. http://dx.doi.org/10.1017/s0714980800001732.
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ABSTRACTSpecially designed outdoor spaces (SDOS) have been developed to improve the quality of life of people with dementia. However, few follow-up studies have been done to examine their use once implemented. The purpose of this study was to gain a better understanding of how SDOS are used and the objectives of their design fulfilled. A qualitative descriptive study was conducted of a SDOS 3 years after it was built to answer the following questions: How has the garden changed from the original design? What are the current patterns of use of the garden? What factors facilitate use of the garden? What are the barriers to use of the garden? Four main sources of data were used: landscape architectural drawings, non-participant observation, focus groups, and in-depth interviews. The results lend support to the theoretical principles of garden design in the literature. The garden was considered an important part of the service program. However, factors such as garden maintenance, organizational support, staff training, and accessibility may limit its impact.
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Kambeitz-Ilankovic, Lana, Nikolaos Koutsouleris, and Rachel Upthegrove. "The potential of precision psychiatry: what is in reach?" British Journal of Psychiatry 220, no. 4 (March 31, 2022): 175–78. http://dx.doi.org/10.1192/bjp.2022.23.
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SummaryProgress in developing personalised care for mental disorders is supported by numerous proof-of-concept machine learning studies in the area of risk assessment, diagnostics and precision prescribing. Most of these studies primarily use clinical data, but models might benefit from additional neuroimaging, blood and genetic data to improve accuracy. Combined, multimodal models might offer potential for stratification of patients for treatment. Clinical implementation of machine learning is impeded by a lack of wider generalisability, with efforts primarily focused on psychosis and dementia. Studies across all diagnostic groups should work to test the robustness of machine learning models, which is an essential first step to clinical implementation, and then move to prospective clinical validation. Models need to exceed clinicians’ heuristics to be useful, and safe, in routine decision-making. Engagement of clinicians, researchers and patients in digitalisation and ‘big data’ approaches are vital to allow the generation and accessibility of large, longitudinal, prospective data needed for precision psychiatry to be applied into real-world psychiatric care.
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Jao, Ying-Ling, Wen Liu, Kristine Williams, Habib Chaudhury, and Jyotsana Parajuli. "Association between environmental stimulation and apathy in nursing home residents with dementia." International Psychogeriatrics 31, no. 08 (June 26, 2019): 1109–20. http://dx.doi.org/10.1017/s1041610219000589.
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ABSTRACTObjectives:Prior research and theories established the link between care environments and apathy. Yet, empirical evidence on how environmental stimulation impacts apathy is lacking. This study examined the association between environmental stimulation and apathy in nursing home residents with dementia.Design:This repeated-measure study analyzed 104 video observations of staff caregiver–resident interactions.Setting:12 nursing homes.Participants:63 unique staff caregiver–resident dyads that involved 42 caregivers and 44 residents with moderate to severe dementia.Measurements:Second-by-second behavioral coding using Noldus Observer software was conducted to assess apathy and environmental stimulation, using the Person-Environment Apathy Rating scale. The environment subscale includes six items: stimulation clarity, stimulation strength, stimulation specificity, interaction involvement, physical accessibility, and environmental feedback. The apathy subscale includes six items: facial expression, eye contact, physical engagement, purposeful activity, verbal tone, and verbal expression. Multilevel linear models were used for analysis.Results:Results showed that apathy was not associated with the overall quality of environmental stimulation but was significantly associated with stimulation specificity (coefficient = −2.23,p= 0.049). However, the association was not significant after controlling for resident characteristics (p= 0.082). In addition, higher levels of environmental feedback were associated with lower apathy levels (coefficient = −2.14,p= 0.001). The association remained significant after controlling for resident characteristics (coefficient = −1.65,p= 0.014).Conclusion:Findings reveal that when environmental stimulation is individually tailored and prompts engagement, residents are less apathetic. This study highlights the effect of environmental stimulation on apathy. Future research should explore interventions that modify environmental stimulation to reduce apathy and improve dementia care.
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Kuzmik, Ashley, John Joseph Hannan, Long Ngo, Marie Boltz, Priyanka Shrestha, Sharon Inouye, Donna Fick, and Edward Marcantonio. "Pilot Testing of the UB-CAM Delirium Screening App." Innovation in Aging 5, Supplement_1 (December 1, 2021): 977. http://dx.doi.org/10.1093/geroni/igab046.3515.
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Abstract Systematic screening improves delirium detection among hospitalized older adults. This poster describes the development and pilot testing of an iOS-based app that incorporates the Ultra-Brief Confusion Assessment Method (UB-CAM), a two-step, delirium detection protocol that combines the UB-2 (2-item screener) and 3D-CAM. Previous work tested a RedCAP-based UB-CAM app in 527 patients with 399 physicians, nurses, and certified nursing assistants (CNAs) showing it can be successfully completed by all three disciplines in 97% of eligible patients in 80 seconds on average with over 85% accuracy relative to a gold standard. To improve accessibility to the clinical setting, our research team now collaborated with a computer scientist to develop and refine an iOS-based UB-CAM app for the iPhone and iPad through iterative “laboratory” testing. The app was piloted by non-clinician, research testers in hospitalized older adults (age x̄ =83, SD= 8.0) with dementia (Clinical Dementia Rating Scale x̄ =1.1, SD= .30); 64% were assessed to be delirium positive. The app demonstrated preliminary efficiency (90 seconds on average), high acceptability (100% satisfaction of users), and reliability (100% inter-rater). This project underscores the need for close collaboration between researchers, clinicians, and computer scientists with iterative testing of bedside-facing apps prior to testing with patients. Next steps include testing effectiveness in a pragmatic trial with clinician users (physicians, nurses, CNAs), integrating the UB-CAM app into the routine hospital care of all older patients. Having rapid, accurate bedside delirium detection has the potential to transform care.
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Prudencio, Gabriela, and Laura Gitlin. "Family Caregiver Assessments: What Have We Learned From Assessments Across Populations and Health Conditions?" Innovation in Aging 4, Supplement_1 (December 1, 2020): 689–90. http://dx.doi.org/10.1093/geroni/igaa057.2410.
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Abstract This symposium will bring together research on assessments of family caregivers for older individuals with different health conditions and discuss the components of effective assessments. Comprehensive characterizations of caregivers are essential due to an increase in the demand on caregivers, and how intense care contexts contribute to the caregiver’s decline in health and diminished capacity to provide quality care. According to Caregiving in the U.S. 2020 (n=1,400), only 13% of caregivers were asked by healthcare professionals what they needed to take care of themselves. Peer-reviewed studies have reported that caregivers are often reluctant to self-identify and to ask for the help that they need for themselves and those in their care. Since supports to caregivers have historically relied on this self-identification, the first presentation (Grace Whiting) will focus on the work NAC has done to build pathways between caregivers and supportive services to increase availability, accessibility, and patient-centeredness. The second presentation (Esther Friedman) will identify and discuss the barriers to fully incorporating family caregivers into the health care team, as well as the solutions for removing barriers. The next two presentations, respectively, will focus on characterizing the prevalence, burden, and unmet needs of caregivers of cancer patients (Erin Kent), and the unmet needs of families of adults with intellectual and development disabilities (Tamar Heller). The final presentation will explore caregiver readiness in dementia care using the Tailored Activity Program (TAP) and how TAP interventionists can use readiness scores to determine caregiver’s capacity (Katherine Marx).
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Romanò, Massimo, Sabina Oldani, Valter Reina, Michele Sofia, and Claudia Castiglioni. "Palliative Care for Patients with End-Stage, Non-Oncologic Diseases—A Retrospective Study in Three Public Palliative Care Departments in Northern Italy." Healthcare 10, no. 6 (June 2, 2022): 1031. http://dx.doi.org/10.3390/healthcare10061031.
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Patients with irreversible malignant and non-malignant diseases have comparable mortality rates, symptom burdens, and quality of life issues; however, non-cancer patients seldom receive palliative care (PC) or receive it late in their disease trajectory. To explore the characteristics of non-cancer patients receiving PC in northern Italy, as well as the features and outcomes of their care, we retrospectively analyzed the charts of all non-cancer patients initiating PC regimens during 2019 in three publicly funded PC departments in Italy’s populous Lombardy region. We recorded the baseline variables (including data collected with the NECPAL CCOMS-ICO-derived questionnaire used since 2018 to evaluate all admissions to the region’s PC network), as well as treatment features (setting and duration) and outcomes (including time and setting of death). Of the 2043 patients admitted in 2019, only 12% (243 patients—131 females; mean age 83.5 years) had non-oncological primary diagnoses (mainly dementia [n = 78], heart disease [n = 55], and lung disease [n = 30]). All 243 had Karnofsky performance statuses ≤ 40% (10–20% in 64%); most (82%) were malnourished, 92% had ≥2 comorbidities, and 61% reported 2–3 severe symptoms (pain, dyspnea, and fatigue). Fifteen withdrew or were discharged from the study PCN; the other 228 remained in the PCN and died in hospice (n = 133), at home (n = 9), or after family-requested transfer to an emergency department (n = 1). Most deaths (172/228, 75%) occurred <3 weeks after PC initiation. These findings indicate that the PCN network we studied cares for few patients with life-limiting non-malignant diseases. Those admitted have advanced-stage illness, heavy symptom burdens, low performance statuses, and poor survival. Additional efforts are needed to improve PCN accessibility for non-cancer patients.