The impact of migration experiences and migration identities on the experiences of services and caring for a family member with dementia for Sikhs living in Wolverhampton, UK

2014 ◽  
Vol 35 (5) ◽  
pp. 1032-1054 ◽  
Author(s):  
KARAN JUTLLA
Keyword(s):  
Family Member ◽  
Life Histories ◽  
Care Services ◽  
People With Dementia ◽  
Health And Social Care ◽  
Biographical Approach ◽  
And Migration ◽  
Person With Dementia ◽  
Migration Experiences ◽  
The Impact

ABSTRACTThis article is based upon qualitative research carried out with members of the Sikh community caring for a person with dementia. Previous research with South Asian carers of people with dementia has reported problems with both access to, and use of, health and social care services namely due to cultural and language barriers within existing services. The research reported in this article sought for an in-depth understanding of the experiences of Sikhs caring for their family member with dementia. The aim of the research was to explore how migration experiences and life histories impact on perceptions and experiences of caring for a family member with dementia for Sikhs living in Wolverhampton in the West Midlands, United Kingdom. The research, undertaken by the author, applied a biographical approach using narrative interviews. Twelve Sikh carers of a family member with dementia were interviewed. Findings highlighted that migration experiences and migration identities are important for understanding participants’ experiences of services and experiences of caring for a family member with dementia. Person-centred dementia care as a model for practice highlights the importance of understanding life histories to support people to live well with dementia, including their family carers. This paper reinforces this message, demonstrating the impact of specific migration experiences on the experiences of caring for a family member with dementia.

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 Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic

2021 ◽  
Vol 18 (2) ◽  
pp. 686
Author(s):  
Clarissa Giebel ◽  
Caroline Sutcliffe ◽  
Frances Darlington-Pollock ◽  
Mark A. Green ◽  
Asan Akpan ◽  
...  
Keyword(s):  
Social Care ◽  
Late Onset ◽  
Care Pathways ◽  
Family Carer ◽  
Family Carers ◽  
North West ◽  
Care Services ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.

scholarly journals The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
M. P. Pomey ◽  
M. de Guise ◽  
M. Desforges ◽  
K. Bouchard ◽  
C. Vialaron ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Clinical Oncology ◽  
Patient Experience ◽  
Emotional Support ◽  
Social Care ◽  
Legal Issues ◽  
Care Services ◽  
Health And Social Care ◽  
Ethical And Legal Issues ◽  
The Impact

Abstract Background Quebec is one of the Canadian provinces with the highest rates of cancer incidence and prevalence. A study by the Rossy Cancer Network (RCN) of McGill university assessed six aspects of the patient experience among cancer patients and found that emotional support is the aspect most lacking. To improve this support, trained patient advisors (PAs) can be included as full-fledged members of the healthcare team, given that PA can rely on their knowledge with experiencing the disease and from using health and social care services to accompany cancer patients, they could help to round out the health and social care services offer in oncology. However, the feasibility of integrating PAs in clinical oncology teams has not been studied. In this multisite study, we will explore how to integrate PAs in clinical oncology teams and, under what conditions this can be successfully done. We aim to better understand effects of this PA intervention on patients, on the PAs themselves, the health and social care team, the administrators, and on the organization of services and to identify associated ethical and legal issues. Methods/design We will conduct six mixed methods longitudinal case studies. Qualitative data will be used to study the integration of the PAs into clinical oncology teams and to identify the factors that are facilitators and inhibitors of the process, the associated ethical and legal issues, and the challenges that the PAs experience. Quantitative data will be used to assess effects on patients, PAs and team members, if any, of the PA intervention. The results will be used to support oncology programs in the integration of PAs into their healthcare teams and to design a future randomized pragmatic trial to evaluate the impact of PAs as full-fledged members of clinical oncology teams on cancer patients’ experience of emotional support throughout their care trajectory. Discussion This study will be the first to integrate PAs as full-fledged members of the clinical oncology team and to assess possible clinical and organizational level effects. Given the unique role of PAs, this study will complement the body of research on peer support and patient navigation. An additional innovative aspect of this study will be consideration of the ethical and legal issues at stake and how to address them in the health care organizations.

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 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 Cognitive Outcomes during COVID-19 confiNemeNt in Elderly and their Caregivers using Technologies for DEMentia (CONNECT DEM): study protocol (Preprint)

2020 ◽  
Author(s):  
Jessica Marian Goodman-Casanova ◽  
Elena Dura-Perez ◽  
Gloria Guerrero-Pertiñez ◽  
Pilar Barnestein-Fonseca ◽  
Jose Guzman-Parra ◽  
...  
Keyword(s):  
Older Adults ◽  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Social Isolation ◽  
Community Dwelling ◽  
Mild Dementia ◽  
Care Services ◽  
Health And Social Care ◽  
The Impact ◽  
Community Dwelling Older Adults

BACKGROUND Coronavirus disease 2019 has forced worldwide the implementation of unprecedented restrictions to control its rapid spread and mitigate its impact. The Spanish government has enforced social distancing, quarantine and home confinement. This restriction of daily life activities and separation from loved ones may lead to social isolation and loneliness with health-related consequences in community-dwelling older adults with mild cognitive impairment or mild dementia and their caregivers. Additionally, an inadequate access to healthcare and social support services may aggravate chronic conditions. Technology home-based interventions emerge for combating social isolation and loneliness preventing the risk of viral exposure. OBJECTIVE The aim of this cohort study is to explore, analyze and determine the impact of social isolation on: 1) cognition, quality of life, mood, technophilia and perceived stress of community-dwelling older adults with mild cognitive impairment or mild dementia, and on caregiver burden; 2) health and social care services access and utilization, and 3) cognitive, social and entertainment use of ICTs. METHODS This study will be conducted in the Spanish region of Andalucía (Málaga). In total 200 dyads, consisting of a person with mild cognitive impairment or mild dementia (PMCI/MD) and their informal caregiver will be contacted by telephone. Potential respondents will be participants of the SMART 4 MD (N=100) and TV-AssistDem (N=100) clinical trials. RESULTS The change in means in the variables will be analyzed comparing baseline results in the previous studies with those during and after confinement using the ANOVA test of repeated measures or the non-parametric Friedman test if appropriate. The performance of a multivariate analysis of variance (ANCOVA) to introduce possible covariates will also be contemplated. A 95% confidence level will be used. CONCLUSIONS If the hypothesis is proven, these findings will demonstrate the negative impact of social isolation due to the COVID-19 confinement on cognition, quality of life, mood, and perceived stress of community-dwelling older adults with mild cognitive impairment and mild dementia, the impact on technophilia, caregiver burden, and health and social care services access and utilization; and the cognitive, social and entertainment use of ICTs during the COVID-19 confinement and afterwards. CLINICALTRIAL NCT: 04385797

scholarly journals 211 - Changes to post-diagnostic dementia support in England and Wales during the COVID-19 pandemic

2021 ◽  
Vol 33 (S1) ◽  
pp. 13-13
Author(s):  
Alison Wheatley ◽  
Marie Poole ◽  
Louise Robinson
Keyword(s):  
Social Care ◽  
Third Sector ◽  
Full Time ◽  
England And Wales ◽  
Team Meetings ◽  
Use Of Technology ◽  
People With Dementia ◽  
Health And Social Care ◽  
The Impact ◽  
Diagnostic Support

Background:The COVID-19 pandemic precipitated widespread change across health and social care in England and Wales. A series of lockdowns and UK Government guidance designed to reduce the spread of COVID-19 which emphasised social distancing and increased use of personal protective equipment led to changes such as increased use of remote consultation technologies and the closure of services deemed non-essential. This included many services for people with dementia and their families, such as day centres and dementia cafes.Objective:To explore the changes made to services during the pandemic and the impact of these changes on the delivery of good post-diagnostic dementia support.Method:Professionals who had previously been recruited to the ongoing PriDem qualitative study were approached for follow up interview. Eighteen interviews with a total of 21 professionals working in health, social care and the third sector were conducted using telephone or video conferencing.Interviews were audio recorded, transcribed and checked prior to thematic analysis.Results:Key themes emerging from preliminary analysis of the data include: uncertainty about the future and the need to adapt quickly to shifting guidance; changing job roles and ways of working; the emotional and physical impact of the pandemic on staff working with people with dementia and their families; and the impact of changes made (e.g. increased PPE, remote working) on the ability to deliver post-diagnostic support. However, there were also some unintended positive outcomes of the changes. These included the ability to include family members living at a distance in remote consultations, allowing for more robust history-taking, as well as the uptake of technology to facilitate cross-sector and multidisciplinary working between professionals.Conclusion:Delivering post-diagnostic dementia support during COVID-19 was challenging and forced dementia services to make adaptations. Participants expected that some of these changes would be incorporated into post-pandemic work, for example increased use of technology for multidisciplinary team meetings or blended approaches to patient-facing services involving both virtual and face to face work as appropriate. However, most participants agreed that it was not appropriate nor desirable to provide fully remote post-diagnostic support on a full time basis.

scholarly journals Health and social care services for older male adults in prison: the identification of current service provision and piloting of an assessment and care planning model

2013 ◽  
Vol 1 (5) ◽  
pp. 1-138 ◽  
Author(s):  
J Senior ◽  
K Forsyth ◽  
E Walsh ◽  
K O'Hara ◽  
C Stevenson ◽  
...  
Keyword(s):  
Social Care ◽  
Qualitative Interviews ◽  
Research Programme ◽  
Older Men ◽  
Care Needs ◽  
Care Services ◽  
Older Prisoners ◽  
Care Assessment ◽  
Health And Social Care ◽  
The Impact

AbstractBackgroundOlder prisoners are the fastest growing subgroup in the English and Welsh prison estate. Existing research highlights that older prisoners have high health and social care needs and that, currently, these needs routinely remain unmet.Objectives(1) To explore the needs of men entering and leaving prison; (2) to describe current provision of services, including integration between health and social care services; and (3) to develop and pilot an intervention for identifying health and social care needs on reception into prison, ensuring that these are systematically addressed during custody.MethodsThe research programme was a mixed-methods study comprising four parts: (1) a study of all prisons in England and Wales housing older adult men, establishing current availability and degree of integration between health and social care services through a national survey and qualitative interviews; (2) establishing the health and social care needs of older men entering prison, including experiences of reception into custody, through structured (n = 100) and semistructured (n = 27) interviews; (3) the development and implementation of an intervention to identify and manage the health, social care and custodial needs of older men entering prison; and (4) exploration of the health and social care needs of older men released from prison into the community through qualitative interviews with older prisoners prior to and following discharge from prison. Descriptive statistics were produced for all quantitative data, and qualitative data were analysed using the constant comparison method.ResultsThe number of older prisoner leads has increased in recent years but they do not all appear always to be active in their roles, nor in receipt of specialist training. Nearly half (44%) of establishments do not have an older prisoner policy. There is a lack of integration between health and social care services because of ambiguity regarding responsibility for older prisoners' social care. The responsible social service may be located a considerable distance from where the prisoner is held; in such instances, local social services do not co-ordinate their care. The most frequent unmet need on prison entry was the provision of information about care and treatment. Release planning for older prisoners was frequently non-existent.LimitationsThe study used a cut-off age of 60 years as the lower limit for the definition of an older prisoner; evidence has emerged that supports a redefinition of that cut-off to 50 years. Our study examined the care provided for men and this should be considered if contemplating using the Older prisoner Health and Social Care Assessment and Plan (OHSCAP) with older women in prison.ConclusionThe OHSCAP, developed as part of this study, provided a feasible and acceptable means of identifying and systematically addressing older prisoners' health and social care needs. Future work will include the conduct of a randomised controlled trial to examine the impact of the OHSCAP in terms of improving a range of outcomes, including economic impact.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

scholarly journals Carers’ experiences of timely access to and use of dementia care services in eight European countries

2019 ◽  
pp. 1-18 ◽  
Author(s):  
Hannah Jelley ◽  
Liselot Kerpershoek ◽  
Frans Verhey ◽  
Claire Wolfs ◽  
Marjolein de Vugt ◽  
...  
Keyword(s):  
Service Use ◽  
Study Participant ◽  
Formal Care ◽  
Structured Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Timely Access ◽  
Mixed Feelings ◽  
Barriers To Service ◽  
Person With Dementia

AbstractTimely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

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