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The impact on employment and education of caregiving for a family member with young onset dementia: A scoping review Dementia (IF 2.624) Pub Date : 2024-04-16 Kristina M Kokorelias, Nirusa Nadesar, Katherine Bak, Jennifer Boger, Louise Nygård, Anna Mäki-Petäjä-Leinonen, Ann-Charlotte Nedlund, Arlene Astell
Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify:
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The role and impact of therapeutic counselling on the emotional experience of adults living with dementia: A systematic review Dementia (IF 2.624) Pub Date : 2024-04-16 Gill Mathews, Xiaoyang Li, Heather Wilkinson
Introduction There is limited psychological support available to help people living with dementia to deal with the emotional consequences of their condition. Anxiety and depression are commonly experienced in this population, yet the use of counselling and psychotherapeutic interventions is not well documented. Aim This systematic review sought to understand the current knowledge on the role and impact
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Participation in everyday activities among young adult relatives of parents with dementia – A qualitative study Dementia (IF 2.624) Pub Date : 2024-04-05 Marianne Lyngmose Nielsen, Stina Bjørnskov, Rikke Gregersen, Louise Møldrup Nielsen
Previous research has shown that young adult relatives of parents with dementia experience strain through increased responsibility and changed relationships in the family with potential consequences for their emotional, mental and physical well-being. Less is known about how young adult relatives experience their participation in everyday activities typically associated with young adulthood and how
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The change of intimate relationship between people with Alzheimer’s disease and their adult child caregivers: An interpretative phenomenological analysis Dementia (IF 2.624) Pub Date : 2024-04-05 Jihui Lyu, Wenjing Jiang, Qian Xiong, Wenjie Li, Mo Li, Yueqing Hu, Dongmei Jia, Wenchao Gao, Haiyan Mu, Zongjuan Ma
This study aims to explore the change of intimate relationship between people with Alzheimer’s disease and their adult child caregivers as the disease progresses. Twelve adult child caregivers were recruited through purposive sampling. Explanatory phenomenological analysis was conducted to analyse data collected by semi-structured in-depth interviews. This study found a dynamically changing relationship
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Do clinical guidelines support person-centred care for women affected by dementia: A content analysis Dementia (IF 2.624) Pub Date : 2024-04-03 Nevetda Gengeswaran, Alec Brandwood, Natalie N Anderson, Jessica U Ramlakhan, Anna R Gagliardi
BackgroundDementia disproportionately affects women including persons living with dementia and caregivers. Person-centered care, rather than disease-focused, is recommended to improve care for affected persons including caregivers. General practitioners play a central role in dementia care but find it challenging due to inadequate training. The study aimed to assess if and how dementia guidelines provide
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Book Review: Joan Colnbrook's Dementia Painting Dementia (IF 2.624) Pub Date : 2024-03-28 Meagan Ody, Pamela Roach
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Self-report instruments measuring aspects of self for people living with dementia: A systematic literature review of psychosocial interventions Dementia (IF 2.624) Pub Date : 2024-03-28 Jessica Baggaley, Emma Wolverson, Chris Clarke
ObjectiveA positive sense of self may be a key domain of psychological well-being for people living with dementia and therefore a legitimate target for psychosocial interventions in dementia care. Determining the effectiveness of such interventions often requires valid self-report instruments. This review aimed to investigate what aspects of self have been measured using self-report instruments in
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Meaningful co-production to bring meaningful change: Developing the Allied Health Professionals Dementia Framework for Wales together Dementia (IF 2.624) Pub Date : 2024-03-28 Laura Braithwaite Stuart, Natalie Elliott, Rebecca Hanmer, Andrew Woodhead
In line with increasing participatory approaches to service and research design, there is a growing appreciation of the need to understand the lived experience of people accessing care and support, including people living with dementia, their carers and supporters. This article describes the process and value of co-production, used alongside principles of appreciative inquiry and evidence-informed
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Book Review: Dementia in Prisons: An Ethical Framework to Support Research, Practice and Prisoners Dementia (IF 2.624) Pub Date : 2024-03-27 Lisa Zaretsky, Pamela Roach
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“Review of ‘Walk with me: Musings through the dementia fog’ by Peter Berry and Deb Bunt” Dementia (IF 2.624) Pub Date : 2024-03-09 Harishma A Gireesh, Spoorthi B
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Book Review: A critical history of dementia studies Dementia (IF 2.624) Pub Date : 2024-03-09 Zhanhao Jiang, Xiaomeng Shi
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Increased community engagement of Indigenous Peoples in dementia research leads to higher context relevance of results Dementia (IF 2.624) Pub Date : 2024-03-06 Tonya M Kjerland, Shawnda Schroeder, Va’atausili Tofaeono, Melissa Walls, Joseph P Gone
IntroductionHealth research that focuses on Indigenous Peoples must ensure that the community in question is actively engaged, and that the results have context relevance for Indigenous Peoples. Context relevance is “the benefits, usability, and respectful conduct of research from the perspective of Indigenous communities.” The purpose of this study was to apply two tools within an already-published
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The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia Dementia (IF 2.624) Pub Date : 2024-03-05 Thomas Faulkner, Julie Dickinson, Stan Limbert, Clarissa Giebel
Background. The diagnosis of young-onset dementia presents significant challenges both for the person and their families, which often differ from the challenges faced with late-onset dementia. Evidence of the experience of service users and carers tends to reveal a negative appraisal of the care received, citing longer diagnosis times, poor clinician knowledge and lack of age-appropriate care. However
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Do people with dementia and carers get what they need? Barriers in social care and carers needs assessments Dementia (IF 2.624) Pub Date : 2024-03-02 Clarissa Giebel, James Watson, Julie Dickinson, Mark Gabbay, Kath Halpin, Andrew Harding, Caroline Swarbrick
BackgroundPeople with dementia and unpaid carers need to go through a social care or carers needs assessment to access and receive subsidised or fully-funded social care. With no previous evidence, this qualitative study aimed to provide insights into the access to, experiences of receiving and conducting social care or carers needs assessments, and access to social care.MethodsUnpaid carers of people
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Book Review: Perspectives on the person with dementia and family caregiving in Ireland Dementia (IF 2.624) Pub Date : 2024-03-02 Heather L Menne
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Book Review: Dementia: Current perspectives in research and treatment Dementia (IF 2.624) Pub Date : 2024-02-29 Adrienne Ione
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Experiences of Indonesian people with dementia and carers undertaking an online-delivered exercise program Dementia (IF 2.624) Pub Date : 2024-02-26 Yulisna Mutia Sari, Keith D. Hill, Elissa Burton, Den-Ching A. Lee, Aislinn F. Lalor
Participating in physical activity is beneficial for older people with dementia. Little is known however about the perceptions of people living with dementia undertaking an online-delivered exercise program. This study aimed to explore the experiences and perceptions of older people with dementia and their carers in Indonesia participating in an online-delivered exercise program, and factors that may
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An ethnography of mealtime care for people living with dementia in care homes Dementia (IF 2.624) Pub Date : 2024-02-21 James Faraday, Clare Abley, Joanne M Patterson, Catherine Exley
Many people living with dementia have difficulties at mealtimes, which can result in serious complications for physical and mental health, leading to hospital admissions and even death. However, current training in mealtime care for staff working with this population has been found to be poorly reported, with variable effectiveness. It is essential that care home staff are able to provide good care
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Views of healthcare professionals on their relationships with families of people living with dementia: A qualitative study Dementia (IF 2.624) Pub Date : 2024-02-20 Kuai In Tam, Jianwei Wu, Mingxia Zhu
ObjectiveHealthcare professionals as well as families play a vital role in ensuring the quality of care for people living with dementia. However, the relationships between healthcare professionals and families of people living with dementia are not extensively examined, particularly within the Chinese cultural context of dementia. The goal of this study was to explore the views of healthcare professionals
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Giving voice to the voiceless: Understanding the perceived needs of dementia family carers in Soweto, a South African township Dementia (IF 2.624) Pub Date : 2024-02-14 Aqeela Mahomed, Chrisma Pretorius
This qualitative study aimed to provide family caregivers with an independent platform to reflect on and identify their needs in the role of dementia caregiver. Thirty caregivers were interviewed using a semi-structured approach, and data analysis followed a reflective thematic analysis method. The study revealed that Black African caregivers in townships require sufficient information and orientation
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Reflections on co-production: Developing a dementia research funding application with a diverse lived experience group Dementia (IF 2.624) Pub Date : 2024-02-07 Sarah Griffiths, Martin Robertson, Chandrika Kaviraj, Firoza Davies, Marie McDevitt, Al Richards, Marcelline Russell
Introduction and Background to Study: Published work on dementia research co-production focuses on developing health and social care interventions. Less is written about practicalities and experiences of co-producing dementia research funding applications. UK public contributors are typically from white middle class populations. Widening involvement is essential for co-produced research that meaningfully
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Assessment of dementia knowledge in Indian speech-language pathology students Dementia (IF 2.624) Pub Date : 2024-02-01 Pooja Chandrashekar, Hema Nagaraj
ObjectivesSpeech-language pathologists (SLPs) have a crucial role in assisting individuals with dementia due to the communication and swallowing challenges associated with the disease. As the number of dementia cases rises in India at an increasing rate, investigating the level of dementia knowledge of SLP students can offer insight into the preparedness of the healthcare system to meet this emerging
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Life story templates in dementia care: Ambiguous direction and purpose Dementia (IF 2.624) Pub Date : 2024-01-04 Glenn Möllergren, Tove Harnett
BackgroundThe use of life stories in dementia care has been described as a way of seeing every person as an individual, looking beyond their dementia. Life stories have become synonymous with high-quality care, while in Sweden their mere existence in dementia care settings is taken to indicate quality in national comparisons. Such life stories are often standardised, generated by a family member answering
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The experiences of caring for someone with dementia and a learning disability: A qualitative systematic review Dementia (IF 2.624) Pub Date : 2024-01-04 Michelle Hughes, Kerry Hanna, Akpevwoghene Wiles, Ellie Taylor, Clarissa Giebel
BackgroundThe life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia’s progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal
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A culturally and linguistically tailored Community-Engaged Dementia Education Program (CEDEP) for the Houston Vietnamese American community. Dementia (IF 2.624) Pub Date : 2023-11-29 Christina E Miyawaki,Angela McClellan,Kim N Nguyen,Tuong-Vi Ho
Data from the Vietnamese Aging and Care Survey (VACS) showed the high prevalence of disability, depressive symptoms, and cognitive impairment in older Vietnamese immigrants and refugees. We proposed a Community-Engaged Dementia Education Program to examine the Houston Vietnamese American community's literacy on dementia and develop a one-pager educational material. This is a cross-sectional, qualitative
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Vascular cognitive impairment: When memory loss is not the biggest challenge. Dementia (IF 2.624) Pub Date : 2023-11-24 Sara Aj van de Schraaf,Merel F Smit,Majon Muller,Cees Mpm Hertogh,Hanneke Fm Rhodius-Meester,Eefje M Sizoo
OBJECTIVES Vascular cognitive impairment is the second most common type of cognitive impairment. Care needs of community-dwelling people with vascular cognitive impairment and their caregivers have not been thoroughly studied. Therefore, we aimed to explore care needs of people with vascular cognitive impairment and their family caregivers. DESIGN A qualitative interview study. SETTING AND PARTICIPANTS
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Competency development for a volunteer navigation program to support caregivers of people living with dementia: A modified e-Delphi method. Dementia (IF 2.624) Pub Date : 2023-11-17 Madison Huggins,Gloria Puurveen,Barb Pesut,Kathy Rush,Caitlin McArthur
Caregivers of people living with dementia are pillars of the care community. Providing them with adequate support throughout their caregiving journey is essential to their quality of life and may also contribute to improving the care of people living with dementia. Nav-CARE (Navigation - Connecting, Advocating, Resourcing, Engaging) is a volunteer-led navigation program that provides support to older
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Exploring the interplay between dementia, multiple health conditions and couplehood: A qualitative evidence review and meta-ethnography. Dementia (IF 2.624) Pub Date : 2023-11-16 Rosie Dunn,Emma Wolverson,Andrea Hilton
Background: On average, people with dementia live with 4.6 additional health conditions. Additionally, two thirds of carers of people with dementia are spouses, and are also likely to live with multimorbidity, given that older age is strongly associated with an increase in health conditions. Consequently, living with dementia and multimorbidity is often a shared experienced as a couple. However, research
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Better spiritual support for people living with early stage dementia: Developing the diamond conversation model. Dementia (IF 2.624) Pub Date : 2023-11-07 Marc Haufe,Carlo Leget,Marieke Potma,Saskia Teunissen
BACKGROUND People with early-stage dementia could benefit greatly from on-going spiritual support. However, health care professionals working in dementia care often do not have a clear idea of what such support might entail. There is a lack of tools that can help professionals provide such support. The Diamond conversation model used in palliative care could provide such a support. Aims: To develop
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An exploration of the cultural appropriateness of the family-centered function-focused care intervention. Dementia (IF 2.624) Pub Date : 2023-10-30 Rhonda BeLue,Ashley Kuzmik,Michaila Dix,Camille Luckett,Anju Paudel,Barbara Resnick,Marie Boltz
The Family-centered Function Focused Care (Fam-FFC) intervention, is a nurse-family care partnership model aimed to improve the physical and cognitive recovery in hospitalized persons living with Alzheimer's Disease Related Dementias (ADRD) while improving the care partner's experiences. Discussions of patients' needs and preferences between nurses and the patient's close family members have been found
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Connecting, learning, supporting: Caregivers' experiences of a stress and distress biopsychosocial group intervention. Dementia (IF 2.624) Pub Date : 2023-10-27 Craig F Wilson,Sue Turnbull,Lisa Gadon
BACKGROUND Family caregivers are fundamental in supporting people living with dementia to remain at home, however, psychological distress can occur as a result of their caring role. Research into interventions for caregivers of people living with young-onset dementia, including their experience of and the mediating processes of such interventions, remains limited. METHODS An Interpretative Phenomenological
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Patient and caregiver experiences of living with dementia in Tanzania. Dementia (IF 2.624) Pub Date : 2023-10-25 Jessica Walker,Catherine Dotchin,Matthew Breckons,Emily Fisher,Godrule Lyimo,Sarah Mkenda,Richard Walker,Sarah Urasa,Jane Rogathi,Aimee Spector
Introduction: Tanzania is a low-income country with an increasing prevalence of dementia, which provides challenges for the existing healthcare system. People with dementia often don't receive a formal diagnosis, and with a lack of formal healthcare, are often predominantly supported by family relatives. There are very few published data relating to lived experiences of people with dementia in Tanzania
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Use of adapted or modified methods with people with dementia in research: A scoping review. Dementia (IF 2.624) Pub Date : 2023-10-23 Emma Conway,Ellen MacEachen,Laura Middleton,Carrie McAiney
People with dementia are excluded from research due to methodological challenges, stigma, and discrimination. Including perspectives of people with dementia across a spectrum of abilities is essential to understanding their perspectives and experiences. Engaging people living with dementia in qualitative research can require adaptation of methods.Qualitative research is typically considered when researchers
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Cultural inclusivity and diversity in dementia friendly communities: An integrative review. Dementia (IF 2.624) Pub Date : 2023-10-23 Eman Shatnawi,Genevieve Z Steiner-Lim,Diana Karamacoska
People with dementia from culturally and linguistically diverse backgrounds often face poor health and social outcomes such as stigma, depression, and reduced help seeking behaviours. Dementia friendly communities have been shown to reduce stigma, and the gap in health and social outcomes for people impacted by dementia. Despite the large presence of established dementia friendly communities, their
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Role of Interacting and Learning Experiences on Public Stigma Against Dementia: An Observational Cross-Sectional Study. Dementia (IF 2.624) Pub Date : 2023-10-19 Taiji Noguchi,Takeshi Nakagawa,Ayane Komatsu,Erhua Shang,Chiyoe Murata,Tami Saito
Background: Overcoming dementia stigma is a global challenge. Contact and education on dementia may be promising approaches for reducing public stigma; however, the current evidence is insufficient. This study examined the moderating factors associated with the public stigma against dementia, focusing on experiences of interacting with and learning about people with dementia. Methods: This cross-sectional
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Roles and usages of neuro service dogs for caregivers living at home with persons with dementia: An exploratory comparative case study. Dementia (IF 2.624) Pub Date : 2023-10-10 Claude Vincent,Frédéric S Dumont,Annette Rivard,Manon Rogers,Suzette Brémault-Phillips,Cary Brown,Bertrand Achou
The goal of the present study was to examine how canine assistance may support family caregivers and persons with dementia and to document and compare two modalities of home care support. An exploratory comparative case study research design was conducted. Three cases correspond of dyads of a caregiver, a person with mild to moderate dementia, and either a neuro service dog (NSD), a companion dog or
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A mixed method study exploring gender differences in dementia caregiving. Dementia (IF 2.624) Pub Date : 2023-09-23 Vincent O Poisson,Roslyn G Poulos,Adrienne L Withall,Ann Reilly,Leanne Emerson,Claire M C O'Connor
Few studies have investigated the experience of male carers of people with dementia and fewer specifically examined whether male and female carers of people with dementia differ in their approach to the caring role. As such, this research set-out to investigate whether male carers of people with dementia approach the caring role differently to female carers. Data from 167 survey participants (24 males
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The dementia-inclusive choices in exercise project: Using participatory action research to improve physical activity supports for persons with dementia. Dementia (IF 2.624) Pub Date : 2023-09-16 Laura E Middleton,Chelsea A Pelletier,Melissa Koch,Rebekah Norman,Sherry Dupuis,Arlene Astell,Lora M Giangregorio,Felicia Hart,William Heibein,Crystal Hughes,Carole Johannesson,Bethany Pearce,Kayla Regan,Cindy Rossignoli,Melissa Andrew,Jacqueline A Pettersen,Shannon Freeman,
Persons with dementia have the right to equal inclusion in rehabilitation, including physical activity. However, the perspectives of persons with dementia are rarely integrated into decision-making related to physical activity programming, services, and supports. Here, we describe the participatory action research (PAR) approach used to develop the Dementia-Inclusive Choices for Exercise (DICE) toolkit
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Needs of older people living with dementia in low and middle-income Asian countries: A scoping review. Dementia (IF 2.624) Pub Date : 2023-09-14 J M Abdullah,Helen Courtney-Pratt,Kathleen Doherty,Sharon Andrews
BACKGROUND Population ageing in low and middle-income Asian countries is associated with increased prevalence of dementia. The proportion of people with dementia in countries such as Bangladesh and Thailand are increasing. People with dementia can have complex care and health service needs. If these needs are not adequately met, this can result in a decreased quality of life and burden on the health
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"I guess you can interpret it in a number of ways like kind of a milder or the mildest form of dementia?": Multi-stakeholder perceptions of cognitive impairment. Dementia (IF 2.624) Pub Date : 2023-09-11 H Yemm,E Peel,D Brooker
INTRODUCTION Mild cognitive impairment (MCI) has a high prevalence and is a risk factor for dementia. Furthering understanding of MCI has been identified as a public health priority. This research aimed to explore views about the causes of cognitive impairment and identify associations between cognitive impairment, dementia, and normative ageing. METHOD Semi-structured qualitative interviews were conducted
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Exploring why "memory loss" is a misleading descriptor of people living with dementia and can lead to dysfunctional care. Dementia (IF 2.624) Pub Date : 2023-09-05 Steven R Sabat,Alison Warren
Amidst goals for prevention and improved treatment for people living with dementia, much remains needed to enhance the quality of life of those currently diagnosed, especially the transfer of accurate information from professionals to the public. Although many healthcare professionals understand the various types of memory and which are likely to be more affected than others during the progression
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Supportive care decision-making processes of persons with dementia and their caregivers. Dementia (IF 2.624) Pub Date : 2023-09-01 Jean O Taylor,Claire E Child,Rashmi K Sharma,Mary Grace Asirot,Lyndsey M Miller,Anne M Turner
Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions
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Online gallery facilitated art activities for people with dementia during the COVID-19 pandemic and beyond: A narrative review. Dementia (IF 2.624) Pub Date : 2023-08-30 Lara Wiseman,Stephen Isbel,Adriane Boag,Carolyn Halpin-Healy,Diane Gibson,Kasia Bail,James M Noble,Nathan M D'Cunha
Art activities for people with dementia have a range of therapeutic benefits including psychosocial wellbeing and enhanced quality of life. Successful art programs promote social engagement, are inclusive and empowering, and enable opportunity for people with dementia to express themselves verbally and non-verbally. The COVID-19 pandemic and associated social distancing precautions have impacted the
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Lived experiences of maintaining self-identity among persons living with young-onset dementia: A qualitative meta-synthesis. Dementia (IF 2.624) Pub Date : 2023-08-30 Xueting Tang,Junqiao Wang,Bei Wu,Ann-Margaret Navarra,Xiaoyan Cui,Jing Wang
BACKGROUND The self-identity of persons with young-onset dementia (YOD) is affected by the disease progression. However, the lived experience of maintaining self-identity along the disease trajectory is understudied. This meta-synthesis integrated qualitative data on the challenges, coping strategies, and needs of persons living with YOD and how their experiences affected their self-identity over time
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Vietnam's Responses to Dementia - An Assessment of Service Delivery. Dementia (IF 2.624) Pub Date : 2023-08-24 Leona Kosowicz,Kham Van Tran,Henry Brodaty,Elizabeth Roughead,Adrian Esterman,Ladson Hinton,Giang Bao Kim,Susan Kurrle,Thu Ha Dang,Maria Crotty,Andrew Gilbert,Esther Tan,Tuan Anh Nguyen
BACKGROUND This study was conducted to assess Vietnam's dementia service delivery. METHODS Using WHO methodology, website searches of key organisations focused on three aspects of Vietnam's healthcare system: (1) Health and social workforce; (2) Services, supports and treatment programs; and (3) Promotion of awareness and understanding. Data were analysed using content analysis. RESULTS While key members
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Pathways to care for people with dementia in India: An exploratory study using case vignettes. Dementia (IF 2.624) Pub Date : 2023-08-07 Priya Treesa Thomas,Jayeeta Rajagopalan,Saadiya Hurzuk,Narendhar Ramasamy,Meera Pattabiraman,Chiara De Poli,Klara Lorenz-Dant,Adelina Comas-Herrera,Suvarna Alladi
BACKGROUND Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India. AIM This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia. METHODS As
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Reparations for people living with dementia: Recognition, accountability, change, now! Dementia (IF 2.624) Pub Date : 2023-08-05 Linda Steele,Kate Swaffer,Hope Siciliano,Evelyn Rose,William John Mitchell,Karen Kobier,Brenda Bailey
There is a significant and longstanding problem of harm to people living with dementia in long term care institutions ('LTC institutions', referred to by others as 'care homes', 'nursing homes', 'long term care', 'residential aged care facilities'), along with a failure to redress the harm or hold people accountable for this harm. This article reports on an Australian project that found reparations
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Threats to personhood from within the family? A study of family caregivers of people with dementia in the Chinese context. Dementia (IF 2.624) Pub Date : 2023-08-03 On-Fung Chan,Cheryl Hiu-Kwan Chui,Gloria Hoi-Yan Wong,Terry Yat-Sang Lum
BACKGROUND AND OBJECTIVES Dementia care creates ethical and legal dilemmas due to the struggle to balance the quality of care and personhood. Disagreement and conflict in caregiving relationships are common. However, limited attention has been given to particular stressful circumstances, such as care practice and decision disagreements. Moreover, the cultural context of personhood has been overlooked
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Understanding the experiences of people with dementia and their family carers participating in healthcare student dementia education: A mixed-methods evaluation from the time for dementia programme. Dementia (IF 2.624) Pub Date : 2023-08-02 Stephanie Daley,Molly Hebditch,Yvonne Feeney,Georgia Towson,Joanna Pooley,Holly Pietersen,Sube Banerjee
BACKGROUND There is increasing awareness of the potential for positive impacts on student learning from involving people with dementia and family carers within undergraduate teaching. However, research on the experience of people with dementia and their family carers is sparse. This study aimed to evaluate the satisfaction and views of families (people with dementia and their family carers) who volunteered
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Frameworks for cultural adaptation of psychosocial interventions: A systematic review with narrative synthesis. Dementia (IF 2.624) Pub Date : 2023-07-28 Sally Day,Kate Laver,Yun-Hee Jeon,Kylie Radford,Lee-Fay Low
INTRODUCTION Psychosocial dementia interventions may be less effective when used with populations for whom they were not initially intended. Cultural adaptation of interventions aims to increase effectiveness of interventions by enhancing cultural relevance. Use of theoretical frameworks may promote more systematic cultural adaptation. The aim of this review was to provide a comprehensive synthesis
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Economics and dementia: Challenges and responses. Dementia (IF 2.624) Pub Date : 2023-07-28 Martin Knapp,Gloria Wong
Economics and dementia are interconnected in many ways. There is, for example, accumulating evidence of the ways in which dementia impacts on the economic status of individuals and families, on health and social care system budgets, and on national economies. An individual's economic status can affect their risk of dementia and their ability to respond to it. Governments and other strategic decision-makers
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"Give me the knowledge, and I can do what I want with it, it's my right and my choice": Triangulated perspectives on the disclosure of young onset dementia. Dementia (IF 2.624) Pub Date : 2023-07-28 Siobhán Fox,Tony Foley,Suzanne Cahill,Caroline Kilty
INTRODUCTION Receiving a diagnosis of young onset dementia is particularly distressing; the person under 65 years is often in employment, with financial commitments, young children, and an active social life. Some of the stress experienced by younger people experiencing cognitive changes can be reduced by an early and accurate diagnosis, but this is contingent on the timing of disclosure and a process
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'I feel more part of the world': Participatory action research to develop post-diagnostic dementia support. Dementia (IF 2.624) Pub Date : 2023-07-27 Julie Watson,Jane Wilcockson,Agnes Houston,Adele van Wyk,Sarah Keyes,Damian Murphy,Philly Hare,Elaine Wiersma,Charlotte Clarke
Many people living with dementia are 'on the margins', not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the 'Beyond the Margins' project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct
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Standardised data collection from people with dementia over the telephone: A qualitative study of the experience of DETERMIND programme researchers in a pandemic. Dementia (IF 2.624) Pub Date : 2023-07-26 Kate Gridley,Josie Dixon,Ben Hicks,Yvonne Birks,Kate Baxter,Eleanor Miles,Louise Robinson,Rotem Perach,Sube Banerjee
There is a notable lack of evidence on what constitutes good practice in remote quantitative data collection from research participants with dementia. During the COVID-19 pandemic face-to-face research became problematic, especially where participants were older and more at risk of infection. The DETERMIND-C19 study, a large cohort study of people with dementia, switched to telephone data collection
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Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia. Dementia (IF 2.624) Pub Date : 2023-07-22 Jem Bhatt,Gianna Kohl,Katrina Scior,Georgina Charlesworth,Majon Muller,Rose-Marie Dröes
OBJECTIVES People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of disclosure decisions and stigma, and few standardised stigma tools have been validated in languages other than English. We investigated the psychometric properties of Dutch translations of three stigma measures, and explored
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Challenges navigating publicly funded home care in Ontario, Canada: Perspectives from unpaid caregivers of persons living with dementia. Dementia (IF 2.624) Pub Date : 2023-07-19 Husayn Marani,James Shaw,Gregory P Marchildon
In Canada, persons living with dementia represent a sizable number of home care recipients. Although home care is not wholly publicly funded under provincial health insurance plans, some provinces like Ontario subsidize a maximum number of hours of home care provided by a personal support worker (PSW) on the basis of need. The public subsidization of home care may be interpreted as a mechanism of financial
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The MINDSET Study: Co-Designing Training for Interpreters in Dementia and Cognitive Assessments. Dementia (IF 2.624) Pub Date : 2023-07-16 Andrew S Gilbert,Josefine Antoniades,Kerry Hwang,Erika Gonzalez,Jim Hlavac,Joanne Enticott,Xiaoping Lin,Robyn Woodward-Kron,Lee-Fay Low,Dina LoGiudice,Jennifer White,Marina G Cavuoto,Bianca Brijnath
There is a growing demand for interpreter-mediated cognitive assessments for dementia. However, most interpreters lack specialist knowledge of dementia and cognitive assessment tools. This can negatively affect the way instructions and responses are conveyed between clinicians and patients, undermining clinicians' ability to accurately assess for cognitive impairment. This article reports on the co-design
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Delivering person-centred dementia care: Perceptions of radiography practitioners within diagnostic imaging and radiotherapy departments. Dementia (IF 2.624) Pub Date : 2023-07-14 Robert Higgins,Adam Spacey,Anthea Innes
INTRODUCTION Despite abundant literature on the diagnosis of dementia, limited research has explored the lived experiences of radiography practitioners when providing care to people living with dementia in the department. OBJECTIVES This qualitative study explored the perceptions and compatibility of current professional guidance by both diagnostic imaging and radiotherapeutic radiography practitioners
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Evaluating 'living well' with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire. Dementia (IF 2.624) Pub Date : 2023-07-12 Linda Clare,Claire Pentecost,Rachel Collins,Anthony Martyr,Rachael Litherland,Robin G Morris,Catherine Quinn,Laura D Gamble,Serena Sabatini,Christina Victor
OBJECTIVES We aimed to co-produce and validate an accessible, evidence-based questionnaire measuring 'living well' with dementia that reflects the experience of people with mild-to-moderate dementia. METHODS Nine people with dementia formed a co-production group. An initial series of workshops generated the format of the questionnaire and a longlist of items. Preliminary testing with 53 IDEAL cohort
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Discussing physical restrictions in care plan meetings between family members of residents with dementia and nursing home staff. Dementia (IF 2.624) Pub Date : 2023-06-30 Jenny Paananen,Camilla Lindholm
In long-term dementia care, caregivers face a dilemma. On the one hand, they need to respect the residents' right to self-determination, but on the other hand, they sometimes rely on physical restraints to deal with potential violence and self-destructive behavior. The issue of self determination is further complicated by residents often depending on family members as advocates in decision-making.