scholarly journals What is the relationship between people with dementia and their caregiver’s illness perceptions post-diagnosis and the impact on help-seeking behaviour? A systematic review

Dementia ◽  
2021 ◽  
pp. 147130122199729
Author(s):  
Jane E Gregg ◽  
Jane Simpson ◽  
Ramin Nilforooshan ◽  
Guillermo Perez-Algorta
Keyword(s):  
Help Seeking ◽  
Illness Perceptions ◽  
Cultural Beliefs ◽  
People With Dementia ◽  
Help Seeking Behaviour ◽  
Major Factors ◽  
Person With Dementia ◽  
The Impact ◽  
The Relationship ◽  
System Threat

Background: As the number of people with dementia increases, more families will be affected by the daily challenges of providing effective support, given its current incurable status. Once individuals are diagnosed with dementia, the earlier they access support, the more effective the outcome. However, once people receive a diagnosis, how they make sense of their dementia can impact on their help-seeking intentions. Exploring the illness beliefs of people with dementia and their caregivers and this relationship to help seeking may identify how best to facilitate early support. Aims: To systematically obtain and critically review relevant studies on the relationship between illness perceptions and help seeking of people with dementia and their caregivers. Method: A systematic search was conducted and included both quantitative and qualitative studies. The initial search was conducted in October 2018, with an adjacent search conducted in April 2020. Findings: A total of 14 articles met the inclusion criteria. Conceptually, the studies examined the association of illness perceptions and help-seeking post-diagnosis and revealed that people living with dementia and their caregivers sought help when symptoms became severe. Components of illness perceptions revealed that lack of knowledge, cultural beliefs, complexity of the healthcare system, threat to independence and acceptance were identified as major factors for delaying help seeking. Conclusion: Although research interest in the area of illness perceptions and their impact on help seeking for dementia is increasing, further work is needed to understand this area, particularly regarding the influence of the relationship between the person with dementia and their caregiver.

scholarly journals Technology-Driven Solutions to Prompt Conversation, Aid Communication and Support Interaction for People With Dementia and Their Caregivers: A Systematic Literature Review

2020 ◽  
Author(s):  
Viktoria Hoel ◽  
Carine Mendom Feunou ◽  
Karin Wolf-Ostermann
Keyword(s):  
Literature Review ◽  
Social Interactions ◽  
Third Party ◽  
Small Scale ◽  
People With Dementia ◽  
Conversation Partner ◽  
Person With Dementia ◽  
The Impact ◽  
The Relationship

Abstract Background The impact of dementia on communication capabilities can result in difficulties in social interactions and between people with dementia and their conversation partner, as initiating and maintaining conversations becomes increasingly challenging. The role of technology in promoting social health and participation for people with dementia is increasing, but the usage on technological devices as a third party in social interactions to enhance communication quality is still in its infancy. The objective of this literature review is to provide a comprehensive description of technology-driven interventions for people with dementia and their conversation partners to enhance communication and facilitate positive social interactions. Methods A systematic search was conducted using PubMed, CINAHL and PsycINFO, where titles and abstracts were screened by two researchers independently. The reference lists of initially identified papers were hand-searched for further relevant studies. Quality appraisal of the included studies was assessed using the Mixed Methods Appraisal Tool.Results Twenty-six papers were included., where the most common technologies to facilitate communication and interactions were tablet-computers (n=11), social robots (n=7) and PCs (n=4). By analyzing the impacts of the device(s) on social interaction and communication, five major themes emerged: i) increased interaction; ii) better understanding of the person with dementia; iii) improved conversational quality; iv) reducing pressure on the conversation partner; and v) a conversational platform.Conclusion While the majority of the included studies are small-scale, they indicate promising findings on the potential of technology in helping dyads to interact in a way that relieves strain on the caregiver, enhances the relationship and engages people with dementia in social activities. Rigorous investigation using standard, comparable measurements is needed to demonstrate the effects of technological solutions, taking on the perspective on caregiving dyads as an entity rather than looking at outcomes for one member of the dyad in isolation.

scholarly journals Epilepsy and neuropsychiatric comorbidities

2011 ◽  
Vol 17 (1) ◽  
pp. 44-53 ◽  
Author(s):  
Niruj Agrawal ◽  
Suren Govender
Keyword(s):  
Help Seeking ◽  
Seizure Control ◽  
Wide Range ◽  
Help Seeking Behaviour ◽  
Neuropsychiatric Manifestations ◽  
Neuropsychiatric Comorbidities ◽  
The Impact ◽  
The Relationship ◽  
Neuropsychiatric Conditions

SummaryEpilepsy is a common neurological condition with wide-ranging neuropsychiatric manifestations. The relationship between epilepsy and psychiatry has been recognised for centuries. However, the wide range of neuropsychiatric comorbidities and their extent is only now beginning to be appreciated. The impact of these comorbidities on patients' help-seeking behaviour, seizure control and quality of life suggests that early detection and treatment are of paramount importance. Clinical issues in relation to accurate recognition and appropriate management of neuropsychiatric conditions in epilepsy are discussed.

scholarly journals ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs
Keyword(s):  
Well Being ◽  
Cognitive Stimulation ◽  
Social Worlds ◽  
Middle Stage ◽  
People With Dementia ◽  
The Social ◽  
Function Loss ◽  
The Government ◽  
Person With Dementia ◽  
The Impact

Abstract People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

scholarly journals Quality of Care Provided by Family Caregivers of Older People With Dementia: Measurement and Interpretations

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 152-152
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Primary Reason ◽  
People With Dementia ◽  
High Level ◽  
The Impact ◽  
The Relationship

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.

scholarly journals An Examination of Individualism within Employee Help-Seeking Networks

2018 ◽  
Vol 8 (4) ◽  
pp. 1
Author(s):  
Randall P. Settoon ◽  
Sang H. Lee
Keyword(s):  
Help Seeking ◽  
Medical Center ◽  
Future Research ◽  
Dense Networks ◽  
Helping Others ◽  
Regional Medical ◽  
Regional Medical Center ◽  
The Impact ◽  
The Relationship

Prior research focusing on the impact of individualistic orientations on the performance of cooperative behaviors has produced mixed results. Researchers have concluded that the self-focused orientation of individualists will lead them to be less cooperative than others. On the other hand, some scholars have argued that helping others is core to individualists’ self-concept and that competently assuming the role of help-giver is a source of intrinsic satisfaction. In this study, we test this proposition by examining individualistic orientations within employee help-seeking networks. Results from a sample of 107 employees within a regional medical center indicate that the level of individualism in helping-seeking networks is positively associated with help-seekers’ perceptions of support. Further, the results suggest that the relationship is stronger in dense networks. Implications of this work and directions for future research are discussed.

scholarly journals Differences in assistive technology installed for people with dementia living at home who have wandering and safety risks

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Eleanor Curnow ◽  
Robert Rush ◽  
Sylwia Gorska ◽  
Kirsty Forsyth
Keyword(s):  
Assistive Technology ◽  
Selection Process ◽  
Living Situation ◽  
Caregiver Support ◽  
People With Dementia ◽  
Multiple Characteristics ◽  
Person Characteristics ◽  
Person With Dementia ◽  
The Impact ◽  
At Home

Abstract Background Assistive Technology for people with dementia living at home is not meeting their care needs. Reasons for this may be due to limited understanding of variation in multiple characteristics of people with dementia including their safety and wandering risks, and how these affect their assistive technology requirements. This study therefore aimed to explore the possibility of grouping people with dementia according to data describing multiple person characteristics. Then to investigate the relationships between these groupings and installed Assistive Technology interventions. Methods Partitioning Around Medoids cluster analysis was used to determine participant groupings based upon secondary data which described the person characteristics of 451 people with dementia with Assistive Technology needs. Relationships between installed Assistive Technology and participant groupings were then examined. Results Two robust clustering solutions were identified within the person characteristics data. Relationships between the clustering solutions and installed Assistive Technology data indicate the utility of this method for exploring the impact of multiple characteristics on Assistive technology installations. Living situation and caregiver support influence installation of assistive technology more strongly than level of risk or cognitive impairment. People with dementia living alone received different AT from those living with others. Conclusions Results suggest that caregiver support and the living situation of the person with dementia influence the type and frequency of installed Assistive Technology. Reasons for this include the needs of the caregiver themselves, the caregiver view of the participants’ needs, caregiver response to alerts, and the caregiver contribution to the assistive technology assessment and selection process. Selection processes should be refined to account for the needs and views of both caregivers and people with dementia. This will require additional assessor training, and the development of validated assessments for people with dementia who have additional impairments. Policies should support the development of services which provide a wider range of AT to facilitate interventions which are focused on the needs of the person with dementia.

scholarly journals Relationship Between Brand Engagement and Social Media Marketing

2019 ◽  
Vol 8 (4S3) ◽  
pp. 213-218
Keyword(s):  
Social Media ◽  
Tamil Nadu ◽  
Social Media Marketing ◽  
Survey Method ◽  
Brand Engagement ◽  
Media Interaction ◽  
Major Factors ◽  
Chennai City ◽  
The Impact ◽  
The Relationship

This empirical study aims to explore the relationship between brand engagement and social media marketing among the students of higher education institutions in Chennai city of Tamil Nadu. This research study adopts primary survey method with the help of structured questionnaire collected from 388 students those who uses social media networking sites. The result indicates that Integration, E-WoM, Social Media Advertisement, Social Media Interaction and Brand Attitude are the major factors determining the brand engagement among students. The cluster classification and discriminant functions shows that two groups are significantly form namely, low brand engagement groups and high brand engagement groups in their order of dominance. To conclude, it is necessary to create interaction between the customer and brand and consumer to consumer to identify the impact of communication on brand equity.

Stress as Experienced by People with Dementia: An Interpretative Phenomenological Analysis

Dementia ◽  
2017 ◽  
Vol 18 (4) ◽  
pp. 1427-1445 ◽  
Author(s):  
Barbara K Sharp
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
Phenomenological Analysis ◽  
People With Dementia ◽  
Health And Social Care ◽  
Self Worth ◽  
And Coping ◽  
Study Participants ◽  
Person With Dementia ◽  
The Impact

Health and social care research on stress in dementia has predominantly considered the stress experienced by family and professional carers. Focus on the person with dementia has frequently laid emphasis on the impact of stress-related behaviour on others and how such behaviour might be ‘managed’. This paper describes a qualitative study which gives voice to people with dementia on the subject of stress and responds to the need for a better understanding of stress as it is experienced by people with dementia themselves. An interpretative phenomenological analysis was conducted on data collected from a purposive sample of people diagnosed with varying types of dementia from across Scotland. Discussions across five focus groups consisting of 21 participants with dementia in total generated data which was audio and video recorded, and analysed thematically. Five key themes emerged, described in the participants’ own words, which were: (1) ‘Something’s torn, your life’s torn’; (2) ‘Families can bring stress’; (3) ‘It’s the stress of living with dementia’; (4) ‘A whole new set of rules’; and (5) ‘It’s our lives and we’ll get it under control ourselves’. These themes reflect experiences of loss, challenges to one’s sense of self, relationship dynamics, living with the symptoms of dementia, learning to do things differently and establishing coping mechanisms that provide control. Study participants illustrated individual potential for adapting and coping with some of the most stressful aspects of living with dementia, challenging assumptions of inevitable fixed decline and progressive vulnerability to stress. Participants describe a process of recovery in their perceptions of self-worth, purpose and value in life following diagnosis.

scholarly journals Understanding the needs and experiences of people with young onset dementia: a qualitative study

BMJ Open ◽  
2018 ◽  
Vol 8 (10) ◽  
pp. e021166 ◽  
Author(s):  
Luisa I Rabanal ◽  
John Chatwin ◽  
Andy Walker ◽  
Maria O’Sullivan ◽  
Tracey Williamson
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Help Seeking ◽  
Late Onset ◽  
Psychological Impact ◽  
Young Onset ◽  
People With Dementia ◽  
Health And Social Care ◽  
Young Onset Dementia ◽  
The Uk ◽  
The Impact

AimDespite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them.SettingParticipants’ homes, support group premises or university rooms.Participants14 people with a diagnosis of YOD from a northern UK city.DesignSemistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis.ResultsFour superordinate themes are reported on ‘process of diagnosis’, ‘the impact of living YOD’, ‘needs of people with YOD’ and ‘living well with YOD’. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks.ConclusionsPeople who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

scholarly journals Dementia Friendly Hospital Design: Key Issues for Patients and Accompanying Persons in an Irish Acute Care Public Hospital

2019 ◽  
Vol 13 (1) ◽  
pp. 48-67 ◽  
Author(s):  
Dimitra Xidous ◽  
Tom Grey ◽  
S. P. Kennelly ◽  
Cathy McHale ◽  
Desmond O’Neill
Keyword(s):  
Older People ◽  
Negative Impact ◽  
Spatial Scales ◽  
Hospital Setting ◽  
Hospital Environment ◽  
Multiple Perspectives ◽  
Structured Interviews ◽  
People With Dementia ◽  
Person With Dementia ◽  
The Impact

Objectives: Research was conducted to investigate the impact of the hospital environment on older people including patients with dementia and their accompanying persons (APs). The article presents key research findings in the case study hospital. Background: For many patients, the hospital is challenging due to the busy, unfamiliar, and stressful nature of the environment. For a person with dementia, the hospital experience can be exacerbated by cognitive impairment and behavioral or psychological symptoms and can therefore prove to be a frightening, distressing, and disorientating place. Method: The findings are based on a stakeholder engagement process where the research team spent approximately 150 hr observing within the hospital, administered 95 questionnaires to patients and/or APs, and conducted 12 structured interviews with patients and APs. A thematic analysis was employed to analyze and generate key themes emerging from the process. Results: Themes were grouped into overarching issues and design issues across spatial scales. Conclusion: This research confirms the negative impact of the acute hospital setting on older people with cognitive impairments including dementia and delirium. The multiple perspectives captured in this study, including most importantly people with dementia, ensure that stakeholder needs can be used to inform the design of the hospital environment. The research points to the value of understanding the lived experience of the person with dementia and APs. The voices of patients, particularly persons with dementia and their APs, are a crucial element in helping hospitals to fulfill their role as caregiving and healing facilities.

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